I’d much rather be dressed up as a clown, complete with the red nose, oversized shoes, full face paint, and handing out balloons to kids all day than suffer through the agony of attending an upscale cocktail party. And before you ask, I’m not grappling with social anxiety, nor am I living like a recluse. In fact, I’m quite the extrovert and I thrive at parties. So, what’s the catch, you may wonder? It’s an unexpected culprit – my feet. For the past three decades, they’ve been my relentless tormentors, transforming every step into a torturous journey over hot coals. I even have a wheelchair tucked away in my shed, once used for museum outings or standing-room-only events. Today, it’s in our shed, gathering cobwebs. I’ve simply resorted to dodging situations that demand prolonged standing or involve terrain rougher than a football field. That, my friends, is a whole lot of avoidance.
The Trigger
So, when Executive Life Coach, Arda Ozdemir, approached me about a “LIVE” session showcasing his POWER method, I eagerly accepted the challenge. When he asked about a trigger, a situation causing an emotional reaction, I went straight to the embarrassment I experience when I feel different and out of place, like at fancy cocktail parties where standing for long periods is obligatory. Let’s just say my tolerance for standing is about 10 minutes before my feet start sending SOS signals demanding respite. Between you and me, my size 11 men’s extra-wide athletic shoes are far from a fashion statement at swanky soirees. I feel judged from the moment I shlump in wearing orthopedic Velcro sneakers until I blissfully waltz out the door.
Bar Tables. No Chairs??
I hoped my coaching session would provide some laugh-out-loud revelations on how to comfortably ignore my invisible disability, without attracting undue attention. It’s not about shyness; it’s about how I grapple with formal situations where people are numerous and chairs are as scarce as water in the desert. When I see a room full of tall bar tables, I want to crumble like a cookie in a messy heap on the floor. What’s the right amusing thing to say to tactfully draw attention to my plight? How do I blend in and distract from my unfashionable footwear? Should I wear clown shoes and pretend I just came from entertaining at a kid’s party? These thoughts swirl in my mind between winces of foot pain. And trust me, it’s not just my wild imagination at play – I have X-rays and doctor’s notes to prove it!
You May Be Crazy!
Am I Crazy?
Over the past 30 years, I’ve consulted with all types of doctors, who, at a loss for words, subtly hint that my pain is all in my head, suggesting I was a hypochondriac, a malingerer. While I do appreciate the limelight, it’s the positive kind I prefer – not the type where people stare at your unfashionable shoes and wonder why you are sitting on the floor. When the medical establishment can’t give a tangible diagnosis, it’s akin to having an imaginary unicorn horn protruding from your forehead. You schedule an appointment with a surgeon, who inspects your noggin with a magnifying glass and insists there’s nothing amiss. Meanwhile, you’re convinced you’re sporting a rhino-sized bone growth. Next thing you know, they’re calling in interns to gawk and reaching for straitjackets, convinced you need psychiatric help for your delusion. When authorities question your sanity, self-doubt, and confusion set in. Maybe I am losing my marbles, I pondered. It’s a profoundly isolating experience that leads to questioning one’s own mental health.
Seismic Shift in 20 Minutes In that 20-minute coaching event with Arda, my perspective underwent a seismic shift where I was able to see the whole situation from a different vantage point. This wasn’t just about feeling different; it was about the perception of weakness and the fear of not being loved for who I am inside – a person with stylin’ orthopedic shoes! As we delved deeper into my psyche, I unearthed childhood memories that were dictating my behaviors and reactions. I was constantly operating under the constraints of a limiting life script!
As we unpacked this personal trauma and released its grip on my heart, my cloudy view of the past became crystal clear. I thought about my son who was born with a progressive nerve disease. I never once perceived him as weak or fragile. I believed he could conquer the world; I wanted him to know he was capable, invincible, and deeply cherished. Throughout his childhood, my message was clear: go out there and embrace your talents because you are worthy, skilled, and unbeatable. And that’s exactly how he lives his life – unshackled and in the moment.
The Epiphany
During our session, I experienced a remarkable epiphany. I realized I had never fully embraced the philosophy of “you can achieve anything you set your mind to” when it came to myself. I had chosen to ignore the podiatric elephant in the room by pretending to fit a singular vision of “normal.” But the truth is, there’s no universal definition of normal – normal is relative, unique to each individual like a fingerprint. Everyone has quirks that make them distinctive. So rather than masking my pain, I could acknowledge it as an intrinsic part of my identity.
Why was I willing to believe this empowering message wholeheartedly for others but not myself? I had loathed standing out in any way, trying to keep my pesky foot problems under wraps. Year after year, I tiptoed cautiously through life, keeping up an act of perfect health, sidestepping events that put my foot troubles front and center. But most likely, people wouldn’t have judged me as harshly as I imagined. Most would probably respond with empathy and understanding.
Solutions
So how can I reshape my future social butterfly wings? When faced with a chairless situation, Arda and I pondered alternative approaches. Instead of desperately seeking a hidden bench or chair to sink into while blinking back tears, I could try a different strategy. Why not use those precious 10 minutes of standing to initiate a lively conversation about the joys of orthopedic shoes and steer us toward seating? Or better yet, make a preemptive call to the event venue to ensure seating options for those of us with limited standing endurance. Who would decline such a reasonable request? And even if they did, who cares? I’m sure most venues come with chairs and I’d easily find someone else eager to engage in a seated tête-à-tête.
Conclusion
In just 20 minutes, Arda guided me through the POWER process, and it revolutionized my perspective on my foot fiasco. I realized you don’t need to remain trapped in old patterns and stories. With an open mind and a willingness to change habitual behaviors, there are always avenues to bring light and joy into your life. It’s not about the shoes…….it’s all about feeling safe, self-confident, and aware.
Me, Gilles, Yohan, and Chris: One Family, One Purpose, One Mission
Our Journey
Our journey with the Charcot-Marie-Tooth Association (CMTA) began in 2001, soon after my 7-year-old son, Yohan, was diagnosed with CMT 1A. Known as a heritable peripheral neuropathy, CMT is a genetic disease usually passed down from generation to generation. Still, no one in our past or present families showed symptoms or had been diagnosed with progressive neuromuscular disease. We scratched our heads for months and wondered why his hands were weak, making writing, zipping, and buttoning difficult; why couldn’t he climb the monkey bars, ride a bike or fit into penny loafers? His instep was so high, and his toes started to curl due to an unusually high instep. After much speculation and debate, Yohan’s physical therapist tested his knee reflexes, and after learning that he had none, we were sent to a pediatric neurologist.
The Diagnosis
After an initial visit and some testing, He announced Yohan had a rare disease with the words ‘shark’ and ‘tooth’ in it. At first, I thought he had said “Shark Tooth disease” (wait, what?), but later I saw the name written out – Charcot (Shahr-KOH)- -Marie-Tooth disease. Dr. Sum used terms like progressive, demyelination, spontaneous mutation, nerve damage, and muscle weakness. I was under the strongest impression he had made a mistake and had to have pulled the wrong chart. When the words ‘incurable’ and ‘degenerative’ came out of his mouth, I stopped listening; my mind became void of thought and memory. There were no treatments or cures for CMT, but the neurologist handed me a pamphlet from a non-profit organization in Glenolden, Pennsylvania, providing patient support and resources. “Seriously?” I thought. How will this small non-profit on the east coast with 3 ½ employees help me or my 7-year-old? It all seemed unreal and absurd at the time. Blindsided by the news, we all left the hospital dazed, confused, and in a state of lingering shock. After I had time to digest the repercussions of a CMT diagnosis, my reality shattered; I felt broken and lost. Here are my thoughts at that time:
A World Shattered in a Million Pieces
My world shattered into millions of pieces the day of diagnosis, and I never thought we’d be able to pick up all the scattered bits to rebuild our dreams, hopes, and wishes for Yohan. I quickly learned this reassessment would not be a one-time project but a repetitive task taking time, effort, and a lot of soul searching. Seeing a child struggling with pain, braces, physical limitations, and apparent differences made me unspeakably sad. My maternal instincts told me to protect, shelter, cajole, and especially do something—anything—to make the world a friendlier, more secure place for him. The more his self-esteem plummeted and his self-confidence lessened, the more I would try to make his life easier in any way possible. Yet, kids are resilient and smart. On some level, Yohan felt my fears and reflected them back by becoming increasingly anxious, less focused, and, simply put, a very unhappy child. Something had to give.
What Else Could We Do?
Lightening his load did not seem to be the answer, nor did catering to his every need. In retrospect, I realized I was giving him permission to become more dependent on me for everything, and his teachers in school commented on his lack of autonomy and self-motivation. My husband and I thought long and hard about what was playing out before our eyes and decided to get help from a therapist who counsels families on raising children with medical challenges. Intuitively, we knew what measures needed to be taken, but agreeing on and implementing change is hard, and we desperately needed someone to guide us. Slowly but surely, we stopped treating him as different (i.e., weaker, less capable) and let him experience the world on his terms. This was probably the hardest but most essential job I had as a parent of a child with a rare disease.
Scuba Diving as a family!
Tools for Independence
Working together, my husband and I learned how to provide Yohan with the tools needed to be independent, self-sufficient, tenacious, and optimistic. After numerous discussions and much trial and error, we agreed and worked as a family towards common goals. My husband started bringing Yohan on camping trips, scuba diving trips, desert excursions, and kayaking adventures, which gave him a sense of adventure, autonomy, and normalcy. I changed my mindset, letting him blow off steam on the way home from school, and listened without judging by creating a safe space for him to open up and talk. Sure, I still tended to stray at times, fretting over hypothetical possibilities, living much too far in the future, and being obsessed with “what ifs,”—but a shift was taking hold, and overall, life became more manageable and much more fun. We all consciously lived in the NOW, not in the past or future, and cherished the present moment. It was obvious Yohan’s chances of becoming a high-ranking athlete were slim to none, but who cares? We had a golden opportunity to do things a little differently, creating a life full of enriching and rewarding experiences. Over the years, our motto has been, “We’ll Make it Happen.” We followed our dreams, lived in the moment, cultivated new experiences, and lived our best lives possible. We chose to take family trips (even if it meant pulling him from school) as a form of continued education – we visited Europe (Yohan was born in France, where we lived for the first three years of his life), Ecuador, and the Galapagos Islands, Tanzania, Bahamas etc.
Super Dad
My husband Gilles accompanied his high school class on their annual European adventures. Yohan also became an expert archer, scuba certified, a horse rider, a history buff, and an animal expert. (I was strict with TV and allowed him only to watch History Channel or Animal Planet. He thanks me today, but at the time, not so much,) With the help of his tutor, Rick, he worked around his learning differences and graduated from a first-class University – Pitzer College. Despite a 1 year pause for foot reconstruction surgery (which failed the first time, requiring a complete redo of the entire surgery, consisting of 15-18 separate procedures), Yohan soldiered on and went to Graduate School for Organizational Psychology at Claremont University. Today, he’s autonomous, enjoying his own apartment and working full-time at a start-up company in the field of HR, where he is experiencing a ton of success. He loves his job, his colleagues, and his work.
Teaching Kids Early on, I reached out to that non-profit organization, CMTA, with 3 ½ employees and decided to volunteer my time to CMTA, learn all I could about CMT, meet and work with others who lived with CMT, and build community. I started writing articles about Yohan and how CMT affected him and our family. I created a school-based program to teach kids about CMT in a fun, non-threatening way. The effects of this program helped Yohan’s peers put themselves in his shoes so they could empathize vs. sympathize with him. Yohan was bullied quite cruelly in 3rd and 4th grade due to his apparent differences. Still, once the kids understood the reality of CMT, they courageously put judgment aside, suppressing their taunts in favor of support, compassion, and collaboration.
20 years ago, the CMTA had a dozen loosely scattered support groups nationwide. I reached out to all the support group leaders and brought everyone together under the auspices of CMTA. I stepped up and started a branch in California myself to get the experience and resources needed to help everyone and anyone with CMT. The groups grew from 12 to 75 across the country in the blink of an eye. There is strength in numbers, and we all worked collaboratively to reach as many people as possible, find resources for people with CMT and their families, and get first-hand information from our lead clinicians about CMT.
After finding so many new people who wanted to get involved in growing CMTA, I got the green light to organize the first-ever Branch Leader Conference in Las Vegas, where our CMT researchers, physicians, and leaders from all over the country came together for educational seminars, bonding experiences and an overall sense of solidarity and mission to change the world for people living with CMT. At this first branch leader conference, I met Jeana Sweeney, who had CMT, and her young daughter, Rylee.
Jeana shared my ideals, passion, and determination, and I discovered early on that this woman had a natural gift for fundraising! Our friendship has spanned over 20 years, and together, we maximized our creative freedom, innate talents, and desire to change the world. We generated ideas, implemented projects and became movers and shakers of the CMTA community. Jeana and I put together and organized Patient and Family conferences all over the US, inviting CMT experts to speak to CMT patients and providing the necessary information and resources to live well with CMT. We loved our work, the people, the community. Jeana was hired by CMTA as Director of Community Services, and I was asked to join the CMTA’s Board of Directors.
One of our branch leaders had the idea for a CMT Awareness Week, so we implemented that movement, which gained a lot of traction. The following year, Jeana and I decided CMT Awareness Week didn’t have enough meat, so we created CMT Awareness Month to help better understand the issues affecting people with CMT. Today, we celebrate CMT Awareness Month in September to fundraise for a cure, dispel myths, educate the medical community on how to diagnose CMT, and spread the word, reaching out to friends or family members who are facing a CMT diagnosis. CMT Awareness Month has become a worldwide movement.
Hero Dad
My husband, Gilles, always supported my efforts on Yohan’s behalf but remained a silent partner, encouraging me to do my thing. When I joined CMTA, he worked as COO of Hewlett Packard, and his time was sparse. We created the Yohan CMT Fund to financially support the CMTA’s research efforts. Gilles is an experienced mountaineer, skier, and cyclist, so Yohan’s diagnosis was emotionally tough but not insurmountable. Gilles’ adventurous spirit and longing to create memories with his only son became boys-only camping weekends and kayaking trips. I am not a camper, more of a glamper, so I am happy Gilles took him for out-of-this-world outdoor experiences, but of course, my anxiety seemed to sneak up on me. Gilles let Yohan find his own safety limits and boundaries. He encouraged him to do activities I would have immediately shunned for fear of injury.
After one of these memorable weekend adventures, Yohan burst through the door, unusually excited to tell me all about their weekend. First of all, I learned an ocean wave had snuck up on them, drenching his only pair of extra wide shoes, which contained his custom-made orthotics. The issue was not with the water but how Gilles tried to dry them. Thankfully he removed the orthotics before leaning the shoes up against the sticks of their campfire. They retrieved the shoes the following day, but the soles had melted entirely off….ooooops! That’s nothing compared to the picture of Yohan walking dangerously over a fallen tree high above the ground over a creek bed. I freaked out. Yohan was smiling ear to ear, as was Gilles. “What’s so funny?” I yelled. “He could have broken all your bones or even died out there!” That’s when they told me how they manipulated the camera angle to make it look much more dangerous than it was. Do I believe them? It does not matter. Gilles let him be free, allowing him to just be a “normal” kid without the label of CMT hanging over his head.
To this day, I admire my husband’s flexibility and willingness to find activities Yohan could embrace and physically succeed at. I conclude with the statement that our lives were never boring!
Funcle (Fun Uncle) Chris and Yohan: A Forever Bond.
My Family
My family has always been super supportive of me, Yohan, and the CMTA. But no one on either my side or my husband’s side of the family had CMT, and it was extremely hard to relate to all the day-to-day challenges of having a rare disease. One day, my brother, Chris, and his family met up with me and Yohan in the Bahamas for vacation. Our two families stayed close and often met up in Vermont (where I was born and raised), California (where we live), or a neutral vacation spot to spend quality time together. One winter in VT, Chris looked downtrodden. Seeing a change in Yohan’s physical abilities, Chris reminisced, “We used to ski, snowboard, hike, and play racquetball, but those sports are no longer CMT-friendly. How can I continue to be part of his life and show my love for him?” He paused briefly before proposing, “How about if we did a cycling fundraiser in VT to support Yohan, others with CMT, and the CMTA’s Strategy to Accelerate Research (STAR) initiative? What do you think?” Without hesitation, I said, “Let’s do it! Of course! Let’s do it!”
100% Family Support: L to R – Rachel and George Ouellette, Kathleen Vandevord, Uncle Chris, Aund Mia, Cousin Warrne Ouellette, Yohan, Cousin Lila Ouellette, Grandma Bev, me, Nancy Appleton.
Cycle 4 CMT
As a result, Cycle 4 CMT was born in the summer of 2014. Chris also joined CMTA’s Board of Directors. From 2014 to 2023, partnering with the Charcot-Marie-Tooth Association (CMTA), we successfully raised over $2,000,000 to support the development of new drugs to treat CMT, to improve the quality of life for those with CMT and, ultimately, to find a cure! Chris and I grew the VT cycle, making it a nationwide event. Not only did we raise $2,000,000 over 9 years, but the effect on Yohan has been tremendous. Yohan tried biking again after failing miserably when he was seven, thanks to his uncle’s unwavering support and belief in his capabilities. With the help of his Uncle Anthony, his dad, Gilles, and Chris, Yohan regained confidence, learned balance, and gained self-confidence. Today, his electric bike has rocked his world, allowing him to cycle with his Uncle Chris, his dad, and his good friend, Vincent.
Yohan’s entire journey with CMT has been an incredible story of love, passion, support and transformation. Chris also had the idea of doing a podcast 5-6 years ago, but the idea didn’t catch at the time. Undeterred, he brought the idea up again several years ago, and this time, he would not take no for an answer.
CMT 4 Me Podcast: Giving Voice to the Community
In September of 2021, Chris and I launched – CMT 4 Me Podcast, which has enjoyed incredible success. CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people with CMT, their friends, family and the general public. It provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges and share successes. Another goal is to spread CMT awareness and unite as a community. The CMT 4 Me podcast releases every 3 weeks and covers research updates, fundraising, unique stories and interviews with the CMTA community, including board members, branch leaders, and team members. The brother/sister dynamic makes the podcast fun, educational, emotional and relevant. I might hate CMT, but my connections with friends, family and community are invaluable. Listen here: https://www.podpage.com/cmt4me/
My husband left his job and eventually retired at 58 years old. The CMTA was undergoing organizational changes when he was asked to step up as CMTA’s Chairman of the Board of Directors. CMT research and science were his interests, and today, he works closely with our clinicians, scientists, researchers and pharmaceutical companies to find a cure for CMT. He also is passionate about the CMTA, the people and our future generations.
For Parents of Children With CMT
If your child/children have CMT, life can still be enjoyable and fulfilling. There is no one road map to raising a child with CMT, but here are a couple of key concepts I often share:
• Accept (eventually) the CMT diagnosis – it’s the first step.
• Talk about CMT with family and friends; don’t hide it.
• Help your children describe what CMT is, in their own words, if asked.
• Let your children know it will all be okay because it will.
• Embrace challenges and praise your children for doing their best.
• Create a safe space for your children to talk about frustrations and anger.
• Let go and let them live their lives to the fullest, with autonomy and independence
• Laugh heartily and often. Laughter really is the best medicine.
• Involve yourself with the CMTA. We have so many resources for parents and kids alike. The CMTA has grown exponentially over the past 20 years.
Today, we have:
• A vast library of on-line resources for the CMTA community, including brochures, booklets, webinars, articles written by CMT specialists on the CMTA Advisory Board.
• CMTA Branches (support groups) across the United States.
• CMT Centers of Excellence: patient-centric, multi-disciplinary CMT clinics all over the globe, staffed by some of the highest quality CMT clinicians and researchers in the world.
Through these CMTA Centers of Excellence, children, adults and families affected by CMT can be assured of receiving comprehensive care by a team of CMT experts.
• Youth Programs and Compass Adult Programs.
• CMTA’s Camp Footprint (East and West) is the only camp in the United States just for kids with CMT! It is an annual, FREE, six-day sleepaway camp for youth (ages 10-18) with CMT. Camp Footprint envisions a world where children with CMT are empowered with the courage, hope, skills and community for a lifelong journey of realizing potential and developing strengths.
• CMT 4 ME Podcast, Walk 4 CMT, Cycle 4 CMT, Stream 4 CMT.
• CMTA Summit and Patient and Family Conferences.
• Patients as Partners.
• World-Renowned Research Program to Accelerate Drugs to Market for a cure or Strategy to Accelerate Research (STAR).
Our journey with CMT has been one of triumph, growth, and transformation. Together, we have faced countless challenges, finding strength in unity and the unwavering support of the CMTA community. We learned that focusing on abilities, not disabilities, can lead to a life full of extraordinary achievements.
My One Gift
I could not be prouder of Yohan. He’s kind, empathic, funny, and engaging. He rarely complains about his CMT, and lives with the knowledge that every day is a blessing. He has a supportive extended family and friends who love him for his authentic self. ” I want to leave him with the empowering knowledge that he holds the key to realizing his heart’s desires – all he has to do is believe in his own capabilities!” In many ways, CMT has been a gift, presenting a canvas upon which my ideas can be seen and embraced. I feel incredibly fortunate that others have trusted my intuition and allowed me and others to fulfill our dreams and wishes on behalf of CMT community. My time with the CMTA, serving people with CMT has made my life worthwhile and incredibly gratifying.
Thank you to Kate Gwinn, Specialist, Product Communications from Horizon Therapeutics who asked me to write our story for Horizon Therapeutic’s website. She graciously reached out, asked questions, provided questions and quickly turned it all around to make this the most comprehensive and most memorable article I’ve ever written. Thank you for spreading awareness of Charcot-Marie-Tooth disease and CMTA!
Always 10 minutes late? Or do you prefer being 15 minutes early? Does your spouse always have to do yet another task before leaving the house? Are you and your family quarreling endlessly about when to leave for an on-time arrival? First, stop fighting! Then, explore the possible reasoning behind each person’s viewpoint. Get curious, ask questions, and try to understand why people behave as they do. A glimpse into the past is the first step in getting to where you want to go with a smile!
It was a blustery winter afternoon in the San Francisco Bay Area; I was in my car’s passenger seat, waiting impatiently for my driver (my husband) to meet friends for a show in San Jose. As splotches of rain dropped messily on the windshield, I felt anxious about possibly arriving late. It was a Friday night with traffic, slippery highways, road ragers, etc. The plan was to leave at 6:00 pm, but at 6:06 pm, I was still sitting in a parked car in front of my home, thinking, “Wow, how disrespectful. A 6 pm departure is the same in every language, right? Why can’t he just be on time for a change?”
My thoughts screeched to a halt as I saw my husband walking hurriedly toward the car, covering his head with the hood of his rain jacket. But instead of hopping into the car, he flew by me, hauling the garbage bin down our long flag lot driveway. “You’ve got to be kidding,” I fumed.
He was in the driver’s seat eight minutes later, soaking wet, keys in the ignition, and announced playfully, “Buckle up!” At first, he was completely oblivious to my annoyance until he saw my face (after 30 years, he knows the look), which said it all, and so much more. Attempting to lighten the mood, he added, “Don’t worry, we’ll be on time!” “I hope so, ” I whispered while focusing on relaxation, my breath, and the melodic drumming of rain on the windshield.
At that moment, I had a choice on how to react. I could have become angry, ruining the evening, or stayed grounded and let it go. I decided it wasn’t worth the headache, so I let it go. The upside is I didn’t have to bring the garbage down the driveway in the rain!
Can we both be right?
Who is Right?
Before getting into yet another circular argument about his chronic 5–10-minute late performances, I asked Arda, “Don’t you think he’s being selfish and disrespectful? I mean, he did prioritize garbage over me!”
With a hint of a smile, Arda lets me in on a secret, “I used to be three or four minutes late for everything. Do you know why I used to run 3-4 minutes late,” he asked rhetorically. “I never felt as though there were enough minutes in a day to finish what I’d set out to do. I was in a constant state of anxiety about not maximizing my time. My yearning to be efficient pushed me to send out one last email, put away one straggling item, and complete one forgotten task.”
“Arda, you sound like my husband,” I exclaimed. “I’ve read about people like you. I’m officially pathologizing your behavior, diagnosing you with one more task syndrome,” I joked.
“Oh, really,” he asked with raised eyebrows. “I’m so glad I finally received a diagnosis! Thank you.”
He added, “Elizabeth, do you really think your husband is thinking, ‘Well, she hasn’t been angry in a while. I will take my sweet time tonight, so she’ll be upset and won’t talk to me all evening. Let’s do this thing!’ “
“No. Of course not,” I replied. “I never really thought about the whys of the matter, focusing instead on how frustrated I felt.”
Arda continues, “From time to time, I still struggle with being on time; I may occasionally run 1-2 minutes late, but I’ve realized this tendency results from my past conditioning. Thanks to my meditation practice and inward journey, I can resist sending that last-minute email or running into the kitchen to get that glass of water.”
“Well, Arda, you and I are exact opposites regarding this debate,” I admit. “I was taught if you were on time, you were already 10 minutes late. So, when I have a meeting, a Zoom client session, or a dinner date, I am almost always 10 minutes early. Why? I’d rather have time to spare than be held up by traffic, fiddle with tech issues, or deal with computer glitches. I want to be early to maintain my composure, get grounded, and appear together.”
What are you really afraid of?
Playing devil’s advocate, Arda asks me to visualize my being 5 minutes late for a scheduled Zoom call. “How do you feel,” he asks. “What are you really afraid of?”
With a pounding heart, I admit, “I feel extremely anxious, ashamed, and afraid my clients will think I’m disorganized, disrespectful, and incompetent.”
Challenging those thoughts, he asks, “Are those thoughts true? Will your clients really think that?”
“No. Well, I don’t really know, but I don’t think so.” I replied. “Now that I think about it, these thoughts belong to me, remnants of past conditioning. I’ve never really tested out the truth behind the fears. Like my dad, I associate tardiness with disorganization and chaos. I still carry those beliefs, which obviously are not serving me well.”
Then Arda threw a doozy at me, “Have you ever considered what a client might think if they ran late? Since you are strict with your time, they may feel awful about being late to one of your client sessions.“
“Hmmmmm,” I ponder. “I never thought of that. It’s a possibility. Adopting different perspectives sure does help understand oneself and others, doesn’t it?”
Putting the focus back on Arda, I inquire, “So, why did you decide to work on changing your 3-4-minute late tendency?”
He immediately answers, “Because I don’t like the stress you try to avoid.”
“Now we’re talking,” I exclaimed. “We are all so different yet so alike in many ways. Fascinating!”
Returning to my 5-minute late husband ordeal, I now realize he was not purposely trying to be late or to get me to react. An entirely different story unfolded. Knowing him well and reflecting upon his own past conditioning, he was probably just trying to be ultra-efficient with his time by doing what he’s always done – fitting in that one last task. The first step to understanding the root cause of his behavior was getting curious, asking questions, and understanding the framework within which he operates. It all started to make sense.
I still don’t want to be sitting idle in a car waiting for him to finish up last-minute to-do items, but now that I know why he does it, we can have a calm and collected conversation. “Honey, we need to talk!”
In a future article, I’ll explain how we worked together to reach a compromise that works for both of us and meets our communal needs. It’s a work in progress, but with a bit of digging and a few invaluable Rise 2 Realize communication tools, the results will astonish.
This article was created from the materials gathered in an Ask Arda podcast featuring Elizabeth and Arda Ozdemir.
Elizabeth is a Certified Rise 2 Realize Life Coach.
Arda Ozdemir is a spiritual mentor, author of the book Getting Unstuck and founder of Rise 2 Realize Life Coaching School and Ask Arda Coaching.
In Arda’s recent book, The Art of Becoming Unstuck, he likens life to a hot air balloon ride. Even though I’ve read the book twice now, I recently found myself exploring his analogy further into what it means to live life as if floating seamlessly along, enjoying the natural beauty and colorful landscape from a most spectacular vantage point. Whether conscious or not of our inner quest for life, we all aspire to find purpose, achieve our goals, and live life to the fullest.
Well, for some reason or another, we often fail to embrace our hearts’ desires as life’s challenges inevitably weigh us down and distract us from our happiness. We feel heavy, exhausted, and unmotivated whenever we try to reach higher altitudes. Maintaining homeostasis becomes virtually impossible, with many ups and downs: even though some days may be carefree and joyful, many more are saturated with hardship and pain. Reflecting on the hot air balloon ride, we seem to hover endlessly in lower altitudes, unable to take off toward our higher potentials. Little do we know our past experiences, repressed emotions, and narrow perspectives keep us at those lower altitudes, where the ride is anything but smooth. Most days, we end up feeling lost, confused, and helpless. Limiting life patterns stand in our way, posing barriers to the harmonious, joyful life our mind’s eye envisions.
All is far from lost.
The quest for life turns into the profound question of letting go of what’s holding us back and allowing the hot air balloon to rise into the atmosphere where a happier and more joyful life awaits. You may ask, “Can I let go of my past, conditioning, regrets, and character that kept me in lower altitudes?” The answer is a strong yes, as breaking free from the shackles of the past is possible but requires dedication and commitment to a self-discovery journey. In The Art of Becoming Unstuck, Arda guides us to unimaginable heights that we can’t possibly fathom today. The invitation is always there for you, awaiting your first step: Discover who you are under your masks of time-worn experience and relinquish your control to the winds of change. Soon, you will reach your highest potential and live life to the fullest.
Ready? Set? Go! The stronghold of limiting patterns affects our ability to move forward freely. In that case, you might have asked yourself, “How do I get out of my comfort zone into an existence of choice, harmony, and adventure? How do I step off the hamster wheel of life, going nowhere, where I continue sacrificing my happiness for the illusion of security? Believe it or not, my friends, you can jump off that spinning wheel any time. Yep. The power is in your hands to wave goodbye to the mundane, have healthier relationships, find fulfilling jobs, and discover love and joy again. Even if you want just a little more than yesterday, life will open itself up to you if you dare take a few practical steps and apply a few powerful tools and techniques!
Self-Awareness is Key.
Self-awareness is the first step toward personal freedom. It encourages your hot air balloon to slowly take off to higher altitudes, where your ultimate happiness resides, and self-defeating patterns dissolve gracefully. So, heighten your self-awareness when a person or situation triggers you; pay close attention to your emotional reactions and the accompanying thoughts. Why? These situations allow you to discover and closely examine the root cause of your suffering. When triggered, take hold of that emotional thread and pull gently. Work the filament until all the layers unfold, revealing your repressed fears tucked away deep within the subconscious. The next time you are tense, anxious, angry, or sad, ask yourself why you are so by inquiring about the specific thoughts preceding that emotional reaction. For example, let’s say I’m walking into a meeting at work and sweating. I cannot breathe, my knees are weak, and I feel faint. What is happening?
My body reacts to my thoughts: “The moment I step into that meeting, everybody will look with critical eyes. Everyone will judge and challenge me, and I will look stupid in front of my peers.” Those voices in your head bear witness to your subconscious internal programming or the thought patterns, belief systems, and value sets you’ve learned and lived by your entire life.
Origins
Once you become aware of your reactions, get curious and do a deep dive to discover your emotions (responses of the physical body provoked by a stimulus) and feelings (thoughts influenced by our emotions but generated from our reasoning). Your thoughts ignite the charge behind your feelings, so you need to become aware of your thoughts precisely when your emotions flare so you can understand why you are reacting. Little by little, you’ll slowly realize that your emotions are caused by your perceptions or how you see the world. How you see reality stems directly from the belief systems and patterns you’ve adopted from the beginning of time. From this vantage point, you’ll uncover the origin or root of that first emotional hurt you experienced so long ago; it caused the first emotional reaction and defensive actions, which repeat themselves, forming our limiting life patterns. As you continue to pay attention to and investigate the root-cause-effect relationship between emotions, perceptions, feelings, and fears, you’ll feel hopeful, more centered, and in control of your reactions.
Tools
All the materials you need to rise in consciousness can be found in The Art of Becoming Unstuck, written as a workbook for life. Follow the exercises and practice sessions contained within its pages, and you will be on your way to rising above triggers and feeling liberated. The emotional trauma of the past will no longer weigh down your life; you will be on your way to realizing your full potential and attaining ultimate happiness. As an ardent student of Arda’s work and a certified Rise 2 Realize life coach, only now do I realize just how heavy all the sandbags or repressed emotional hurts from the past I was lugging around. No wonder I was scraping the ground when I tried to fly high! The more aware I am of the root causes of my emotional reactions, the lighter I feel. My hot air balloon is climbing steadily in altitude, and the view is magnificent. Want to join me?
Purchase The Art of Becoming Unstuck Elizabeth Ouellette is a certified Rise 2 Realize life coach. She is accepting new clients: elizabetho@outlook.com
“Can you please take your shoes and socks off?” asked the specialist. He wanted to see me walk down the hallway.
It was a Tuesday morning back in the spring of 2018. I was seventeen, about to graduate from high school, and looking towards the next chapter, college. But there was a problem. I started experiencing nerve pain in my feet that quickly progressed, causing my body to have problems with standing or walking. Also, the fatigue I tried to ignore for years worsened. After weeks of waiting, I received a referral to a podiatrist. I hoped that there was an easy fix to my pain. However, that was not the case.
After seeing me walk, strength tests followed. I was surprised when he mentioned there was noticeable weakness in my feet and ankles. I grew up as a dancer and had continued through the last few months of pain. I also had recently begun living my childhood dream of teaching ballet to young kids. In addition, I continued to take classes in various styles of dance. And while balancing schoolwork. How could there be a weakness in my feet?
My question only spiraled into more after the doctor finished writing his notes. He went on to tell me the three words I never imagined to be true in my life.
“You have CMT.”
I only sat there shocked as this shattering diagnosis began to stir in tears, discouragement, and doubts. There had to be some mistake. For the previous three years, I believed this neuromuscular disease only affected some of my family. I had to be fine, right?
Maybe the doctor only diagnosed me with CMT because of the family medical history. I’m sure I would have recognized the signs before since I watched this progressive disease affect others in my family. But, we later found out the diagnosis was correct. I did have CMT, and my life would change.
I knew the journey was going to be challenging. My future would be filled with struggles as I learned to adapt and live with chronic pain and a physical disability. And my dreams of continuing in dance and even pursuing a career after college seemed to disappear.
The Struggles Of Constant Pain
My pain progressed overnight and felt like a continuous nightmare. As the spring turned into summer, the warmth outside turned my nerve pain into a burning sensation. When it was too cold, I noticed numbness and ache. The fatigue felt just as horrible, and my days consisted of tears and trying to hold everything together enough to function. Every time I thought I had reached the amount of pain I could handle, a few months later, it was much worse.
I started wearing AFOs the following year. When I walked on my college campus, I could barely drive home from the loss of strength in my muscles. Each step resulted in more fatigue. I mentioned this to some specialists during a clinical appointment, and they recommended leg braces. I thought these orthotics would help me feel better. And I could continue to go about my schedule without needing as many breaks. That’s not exactly what happened. I realized over time the thick plastic braces brought on blisters and joint pain. The worst part was reaching the point of having to wear them everywhere. Thankfully now, I have different leg braces that are better.
As months turned into years, I realized that my chronic pain was not the only battle I would face. The depression and anxiety grew worse as I didn’t know how to handle the physical pain and stress. So, I endured months of sadness and fear of the future. I also struggled with feeling self-conscious about my disability. I was afraid of judgment from others if they knew I wore leg braces. I had struggled with this for years, and until more recently, only family and close friends knew about my AFOs.
Katerina’s
Blessings From The Pain
When the pain progressed, my heart only longed for more relief and hope that everything would be okay. So, to help with coping, I began writing more frequently in my journals. Most of the words came from discouragement, tears, and anger.
But, over time, I started recognizing the blessings of living in constant pain. My dancing meant even more because of the messages in the music. Many songs were about hope in the darkness, pain, and suffering. This led to a calling on my heart to create pieces of those messages. I started believing that God could use my story to make a difference in others suffering from an illness, pain, or disability. And I was right. I went past what others may have seen as impossible because of how much my CMT affects me.
At 21, I started a blog. I began sharing my story through short blog posts and invited others to be guest writers. This led to more opportunities to speak publicly at events and recently with two different podcasts. One is the CMT 4 Me podcast (https://www.podpage.com/cmt4me/). Though I continue to struggle with constant pain, I found my voice. I found my purpose by sharing my pain.
Another blessing would be I’m about to graduate from college, something I didn’t think would be possible. I went from walking to every class to using a wheelchair most days. While that adjustment took some time, I have been encouraged by the kindness of friends, professors, and staff.
Most of all, I am on the path of pursuing my dream career. In the future, I want to be a Child Life Specialist and help children in a hospital due to an illness or chronic pain. Some of this would be through therapeutic play, advocating their needs, and bringing joy to them and their families. I would have never pictured a more meaningful career if it wasn’t for my CMT.
Furthermore, I get to see those broken pieces of pain, tears, and discouragement put back together into something beautiful. If it wasn’t for the CMT, I most likely would not have the courage to pursue these passions further. And I would not be encouraging those living with chronic pain, disability, or limitations.
Encouragement
Friend, the pain you are experiencing is not the end of your story. You have more to offer than you may realize. Your passions and dreams may look different. And that’s okay. Stay strong, and keep moving forward. You never know how your story can be used to bless others.
Bio: Katerina is a young adult living in Southern California. She will be graduating college soon with a BA in psychology. Some of her passions include dance, writing, and volunteering with organizations such as the CMTA and Diamonds. In her spare time, Katerina enjoys meeting friends for ice cream and spending time with family.
The Meaning of Lifeby Arda Ozdemir and Elizabeth Ouellette
Why did you come to life? To fully experience every moment, Until you find your essence, that is who you are without the layers. Arda
Since I was 12, I’ve been relentlessly asking myself, “What is the Meaning of Life?” Even though many claimed this question was unanswerable, for some reason, a life without exploring this question was “meaningless.” Maybe deep down, I sensed that there was an underlying system to life. Well, how else does one explain nature’s delicate balance? When we look at nature, we witness life and death. Here in California, we have wildfires, where acres and acres of land, brush, and trees burn and perish, but two or three years later, what happens? Time and time again, nature renews itself. I’ve watched its rebirth many times: new leaves sprout, flowers blossom, and saplings spring forth, full of vitality, ready to embrace life again.
We are all equal in the face of death; no one escapes it. I decided to take a scientific approach to this seemingly unanswerable question. I developed hypotheses about life, exploring them in my own life and in the lives of my clients to prove whether these theories were right or wrong. Over time, my answers evolved as I constantly challenged and fine-tuned them. In a sense, I have used “life” as my “lab” to investigate every pattern of life revealed to me. And after many experiments and personal experiences, I finally realized that there is a system of life.
What is this system of life, and how does it relate to human beings? French Jesuit priest, scientist, paleontologist, theologian, philosopher, and teacher Pierre Teilhard de Chardin said: “We are not human beings having spiritual experiences, but we are spiritual beings having human experiences.” What human experiences are we having as spiritual beings, and why do we have them? When you apply Chardin’s quote to the system of life, you’ll understand life’s meaning: To get to know ourselves. In other words, our mission is to use our human experiences to reflect upon who we are and to use them as building blocks toward a higher consciousness. Hopefully, we will gain enough self-awareness and acquire adequate self-knowledge to improve our reactions in the future when we face similar situations. Right there and then, the quality of life improves. Don’t believe me. Test it yourself. Explore life as if it is your lab.
Physical vs Spiritual
Based on Teilhard de Chardin’s words, which describe life so perfectly, we can conclude that we all have two distinct parts – the physical and the spiritual. The spiritual side is the being part, made up of presence and energy; the human being side is the doing part, made possible by the physical body. As spiritual beings having human experiences, could life be a mirror of ourselves for us to learn about Self? When I say Self, I mean the Ego, thought patterns, belief systems, values, fears, repressed feelings, hidden desires, and individual wants and needs. We are doers in the physical world and go through these experiences to acquire self-knowledge. When we are born, we start our lives in survival mode; our spiritual beings are dormant. When you look at very young babies or toddlers, you will see their spiritual beings are active.
Still, since they chose to be born into a nurturing environment, the human side evolves, and the spiritual part is all but forgotten. As life progresses, we accumulate traumatic life experiences and tuck them away deep inside our bodies. Over time, these repressed and ingrained fears create suffering and unbearable pain; they hold us back from living a fulfilling and expansive life. When emotional pain sets in, listen carefully. The universe is sending a message, a wake-up call of sorts. Suffering fosters a connection back to our spiritual part; as a result, we become more conscious – if we decide to answer the call. Imagine how our lives could change if we lived more consciously and made decisions with more mental clarity and emotional balance.
Ask yourself now, “How would your life change?”
The suffering in the world comes from being stuck in your comfort zone. As human beings, repressed fears and faulty beliefs govern our lives. Can you relate to any of the following thoughts?
– I am invisible: I am not seen nor heard – I am not good enough. – I am dismissed all the time. – I am excluded from everything. – I am not appreciated. – I am not connecting. – I feel lonely. I have family, but I’m all alone.
These fears govern our lives, control our actions, and cause our re-actions. We end up paralyzed, trapped in habitual thinking and familiar scenarios. Suffering comes from the conflict between our fears and our desires. So, if I fear not being recognized, my desire will be recognition. My human experience will tilt toward being recognized, and I will run into that same pattern each time I am not recognized. I continuously get triggered and think, “This life sucks because nobody recognizes me.”
How to Bring the Spiritual Being Into Your Experiences?
Whenever there is a trigger, a stressor, or a challenge, pause and notice your emotions. When you think, “Oh, I am angry. I am nervous. I am anxious. I am frustrated. I am jealous. I am sad. I am worried, etc. ” Stop and dive deep into the thoughts creating your emotions.
Emotions are the tip of the iceberg. Dive under the iceberg to grasp what is going on below the surface. I’m inviting everybody to become curious. Your life is your lab. Keep experimenting with self-meditation observation because you need tools and training when survival mode takes charge. We have to learn how to pause when survival mode gets a grip. We don’t know how to stop, and we don’t know how to observe our thoughts. We don’t even know how to notice our emotions. We immediately resort to emotional re-actions and defensive actions. Remember, it is okay to be in your head. Just keep observing the flow of thoughts and assumptions. If my spirit takes on that repressed feeling of not being good enough, I will focus on being included and feeling compassion. Every thought, belief system, and value we develop over time becomes part of our life conditioning. Our internal programming is reflected in every experience we have as human beings. To decipher our experiences, pause, observe what’s happening internally, and examine how we perceive people, situations, and societal messages. When your vision opens up, you see life through different lenses. And guess what? You don’t have to have rose-colored glasses to see positivity in life. You will start connecting with life so profoundly that you don’t have to do anything except pause and observe your thoughts to decipher your internal programming, which develops your spiritual side over time. The higher you rise in consciousness, the closer your true essence is and the higher your integrity will be.
I hope one day, everyone becomes curious enough to explore how this system of life works. My dream is to see everyone discover their purpose on this Earth by bringing their attention inward, embarking on the journey within to understand what is going on so that they can build the spiritual being side of themselves and taste a glimpse of heaven on Earth.
This article is an excerpt from the Ask Arda Podcast. Next podcast coming up in April 2023.You’re Invited: March Community Event
Thanks for reading! I am now a Certified Rise 2 Realize Life Coach, accepting new clients. For more information on Rise 2 Realize and our methodology, go here: https://www.rise2realize.com/our-team
In addition to providing services to adults with CMT, the CMTA provides services to children and teens who are also aware of the struggles that they face every day. Jonah Berger and his team have helped the CMTA transform youth into leaders and fulfill their dreams at Camp Footprint for nearly twenty years. His book The Strangest Of Places was published in 2021, and it is a collection of stories that will leave you laughing, crying, and inspired.
As part of episode 18 of the CMTA’s official podcast, CMT 4 Me, Chris and Liz O. discuss Jonah Berger’s experience with CMT and his role with the CMTA, as well as who Jonah is and what he is passionate about.
Jonah: My role at the CMTA, my official title is the National Youth Programs Manager. So, to boil that down into human talk, I run the youth program and I am responsible for working side by side with the team and with the leadership of the youth to come up with programming and offerings for the youth, connecting the youth throughout the year, and then the big shiny diamond at the top of the mountain Camp Footprint every year.
Chris: Jonah, how did you stumble upon the CMTA? Did you hear about us in a support group?
Jonah: I remember the very day I went to a Patient/Family Conference in Washington, D.C. My mom had signed us up to go and I went with her and I met Jeana Sweeney that very day. That was my first kind of true introduction to someone official with the CMTA. I met Jeana when I first arrived at 9:00 AM. She was the first one I met. By the end of the day, I had also met Elizabeth, who also blew my mind. There are probably thousands of people out there who could easily agree with me. Jeana’s enthusiasm and passion for the mission was infectious. By the end of that day, I had met many people through the organization that just impressed me with their grounded nature in what they were up to, and the fact that they weren’t afraid to have fun and laugh while they were doing it. I caught that day one, and I would say that from then on it was just trying to volunteer or help in any way that I could, and the rest kind of took over organically.
Chris: What type of CMT do you have and some indications of your existing symptoms, and whether those have progressed over the years or where you were 10 years ago? Tell us a little bit about that history?
Jonah: I have CMT 1X, as does my mother, as did my grandmother, as do two of my aunts, and three total out of nine cousins on that side of the family. I have two kids now. I have a three-year-old daughter who does have it. I have a three-month-old son who does not. We know this because with CMT 1X for men, such as myself, every daughter I have, I’ll have given my X chromosome, therefore she will have it. Every son I have, I’ll have given my Y and he will not have it. So we didn’t know what we were having both times, but when they showed themselves to us, we knew right away if they would or would not have CMT.
I would say that my overall effect is pretty balanced. I’m quite an active person. I bike a ton. I’ve done a lot of hiking and crazy things physically in my day. I would say that I have been noticing in the last few years, especially in the last year to two years, that I’m having more trouble with balance than I did before. And as Dr. Shy explains it to me, that is not necessarily at my age.It is the progression of CMT as much as it is CMT working with an ever-aging body. So at the same level, you kind of plateau at a certain point in my case, but as I get older, that same level will appear to be more severe because I’m getting older.
Elizabeth: I was reading your book,The Strangest of Places. Is that the whole title?
Jonah: The Strangest Of Places, which is a Grateful Dead quote.
“Once in a while, you get shown the light in the strangest of places if you look at it right” -The Grateful Dead
Elizabeth: I’m just reading that and devouring it. I’ve learned a couple of things about Jonah, Chris. He was traumatized at a young age by a very mean teacher who brought vegetables in every morning and cut them up, so he never eats healthy. I mean, never even celery. It’s fun reading his stories and he loves nature and he’s out camping. But Jonah, you never mentioned CMT in this book. I’m halfway through. All I know is your father’s chasing after you. You jump in your room, lock the door, and he’s grabbing your foot. I mean, there’s no mention of hobbling over. So I was wondering when you were younger, did you have any symptoms? When did they start?
Jonah: When I was that age, no, I was pretty quick, or else he would’ve caught me. No question about it. You did not raise your voice to my mother when you were in our house, which is a good rule now in retrospect, but my biggest concern being the pickiest eater on the planet was what was gonna be for dinner every night. I would call out to my mom, “Mom! What’s for dinner tonight?” She had her canned answer. You’ll find out when you get to the table. Which is for me, you’ll find out in an hour if you’ll eat or not.
I wasn’t having that. So one night, I had it. I don’t know how old I was. I was probably eight or nine. I said,”Mom, what’s for dinner?” She said,”You’ll find out when you get to the table.” Don’t ask me what came over me. But out of my nine-year-old mouth, I said, “Mom, what the F is for dinner?” And all I heard was my father coming up the steps… My father’s giant feet. I ran and I managed to make it to my room and close the door and push my bed against the door. That’s before my dad got to me.
I didn’t really start showing symptoms per se until I was closer to 13. I would say that’s when I really could tell that my feet were getting a little weaker, that I was having a little bit of trouble doing things that should be completely normal for a 13-year-old. And then, by the time I was 15, you can tell in pictures of the way I walked in videos that I was stumbling more for sure.
Chris: Jonah, were you engaged in sports when you were in school?
Jonah: I was. I played soccer for a few seasons as a kid. I was the manager of the girls’ volleyball team in high school. They were seven times state champs and they were tall and lovely. So it was a great situation for me. I had found a way to become part of a sports team without having any athletic ability.
Elizabeth: It sounds like you were never really shy. You mentioned a lot of crushes in your book and like the sun rose and set in her eyes, you know, like things like that. It doesn’t sound like you were a shy kid, even though you were traumatized about going to school when you were younger.
Jonah: I was not a shy kid by nature. I was a very outgoing spirit by nature. I think what happened in kindergarten (which we laugh about a lot) was a teacher who just lost her cool on me as a kindergarten kid and it did traumatize me for several years. I became shy as a result of that, but I think through a lot of love for my parents and through summer camp. Quite honestly, that’s what brought me back out of my shell and kind of into my natural way.
Chris: Jonah, if you don’t mind, what happened? What was that experience in brief?
Jonah: Mrs. Preston, who we call the Pickle Witch in my family. There is a chapter, by the way, about CMT. You’ll get to it in the second half of the book. I had the best kindergarten teacher in history. Ms. Gillespie. She was so great that they promoted her in the middle of the year to a high-level position in the county. First mistake. You never take a teacher out of the classroom at that age unless you have to. They replaced Ms. Gillespie with Mrs. Preston, who decided she was going to earn the favor of these kindergarten-age kids by instituting a vegetable tasting day every Wednesday.
I was already a picky eater. So she would bring in a vegetable, cut it up, and we’d all have to come up, take a bite, and say what we thought of it. I was having nothing to do with vegetable tasting day, and it all came to a head on pickle day. She brought in a pickle. Cut it up, we came up to try it. She said, “Jonah, will you come up and try it?”
I said, “No, no way.” She said, “Jonah, come up and try it.” I said, “No.” And then, evidently, I don’t remember her screaming, but the room mother told my mom, she just lost her cool and started screaming at me. I went under a table and grabbed the table legs. Mrs. Sullivan, the room mom, went to the office, called my mom, and said, “You better get down here.” They peeled me off my mom kicking and screaming every day for the rest of kindergarten, first, second, and part of third grade.
Chris: Wow. So that went on for quite a while.
Jonah: It was a very traumatic pickle incident.
Elizabeth: How did these experiences of early life help you? Because you’ve always been interested in helping kids with differences with different abilities. Did that have anything to do with the future of helping kids be themselves or find themselves?
Jonah: I would say CMT was major. My dad is like the king of all times with a teacher, camp director, and childcare. He was just the maestro. I think I was always kind of inclined towards working with kids, but my disability helped me to steer that passion into working with kids with disabilities. I think what happened to me as a kindergartner made me extra attentive to the kids who are on the fringes. So on the first day of camp, I am always laser-focused on where the homesick kids are. Let me give them extra love because I know exactly what’s going on in their gut at the time.
Chris: I want our listeners to learn more about Camp Footprint and what you have done, and it’s just such an incredible event. So why don’t you tell our listeners a little bit about Camp Footprint and what that’s all about in your role and your attitude towards it and what you get out of it, et cetera.
Jonah: Well, in 2016, the organization decided it was time to get a camp together just for kids with CMT because the avenue had always been a Muscular Dystrophy Association camp, which is a beautiful avenue. I’m a huge fan of the MDA’s Camp Program. But MDA is an umbrella term that encapsulates 50 different disabilities and diagnoses. I think that CMT, being as prevalent as it is and specific as it is with its symptomatology, needed its own program and they happened to have someone on their advisory board, myself at the time, who was a camp director. His whole career with CMT and was used to working with kids with CMT, so thank goodness it was a no-brainer because it is the greatest joy I’ve ever experienced professionally in my entire life. I’ve been directing eight different camp programs now, including Footprint. And I’ve never seen anything like it.
Jeana Sweeney and Jonah
I’m biased because I help to plan and run it, but there’s something bigger than any one of us that goes on when we get kids together who are used to being the one in their friends’ group, some of them, the only one in their family to have a physical disability, the one that is looked at as abnormal and all of a sudden you put them into a situation where a hundred other kids or 99 other kids and three-quarters of the staff and the director has CMT and not only are they understood, but they are understood about one of their most personal challenges without them having to say one word and they know it. And as a result, everyone relaxes. And I don’t put a lot of value on normalcy, as you can probably tell. They are allowed and gifted the ability to feel normal, some of them for the first time in most of their lives. And it is so cool to watch what happens to a kid when they’re not trying so hard to cover something up, when they can just relax. And that’s the bottom line behind the success of Footprint.
Elizabeth: Bring us through a day in the life.
Jonah: This was the first year of Footprint 2016. On the first full day when the kids were there, the first morning I got up, I grabbed my braces with my right hand, and my shoes with my left hand, and I came out and I sat down on the couch in the common area of the boys’ cabin, and I started doing my morning routine of five minutes of getting my legs strapped on. At one point, I turn my head to the right and two little boys are sitting next to me on the couch putting their leg braces on. And it was the first time in my 43-year-old life at the time that I had company, and I had company that got it, and it was really a pretty incredible moment. We have breakfast, we do chair dancing every morning after breakfast, which is our way of exercising without having to have balance be a part of it.
So everyone sits in chairs. Bridget, our unbelievable Director of Greatness, is leading it. She’s a dance instructor and so many other things, but brought chair dancing to the kids and it is one of everyone’s favorite parts of the day. We just rock out and get our hearts pumping and no one has to worry about tripping or falling. I love it. After dancing, we go to activities in the morning. We have activities in the morning and afternoon. They are traditional camp activities. We do boating and swimming archery! Wall climbing, zip-lining, and fishing. It’s just so fun. And it’s a camp that is designed for disabilities. So everything is adaptive. Their attitude and our attitude is, if you want to do it, we will figure it out. We will find a way to get you to do anything under the sun.
Chris: I think that’s so cool. All the activities you offer and I can only imagine, you must have some of the attendees very hesitant to try some of these new things, right? They’ve never done them and maybe in their mind they’re thinking, I don’t think I can do this. So it’s gotta be such a cool feeling to see them participate.
Jonah: When we are there we ask, “What do you want to do?” We’re never saying, “you can’t, you shouldn’t, you need to do this activity instead of that activity.” We’re saying, “What do you want to do?” If a kid wants to get up to the top of the climbing wall, we’re gonna get that kid to the top of the climbing wall. If it takes three people climbing around them and helping them, they’re gonna get up there. I think that’s different from what they experience in typical days of their lives.
Jeana Sweeney, Jonah and Laurel Richardson
We do lunch. We have rest time after lunch where no one rests, but we all hang out and talk. I think honestly, my favorite activity at Camp Footprint is sitting around and talking to the kids, and the other counselors. It’s as important a part of our day as any other part of our day because the whole goal here is connection. Tapping into the understanding, you get from these other people. So we don’t want you just running around the whole time doing activities. We want you balanced between running around doing activities and sitting there and just talking or listening as other people say. Things that sound like they’ve come directly from your own experience.
We swim in the afternoon, which is so much fun. Then we do dinner, and then we do an evening activity every night. The evening activities are always a blast. We have a dance, we have a talent show. Usually, at one point or another, we do a campfire the first night of camp where I do a drumming circle with everyone and we sing and it’s just wonderful.
It’s funny as a camp director and as someone who’s done triathlons and climbed mountains and done all these big things, I tend to get an inflated sense of ego from time to time. My wife will tell you. But then you hang out with these kids who are facing some unbelievable challenges in the most graceful of ways, and I’m reminded of humility every year at camp, I am reminded of the absolute vital value and importance.
Connection to others, not just of your own tribe, but of each other. I think the biggest gift that CMT gives us and that Camp Footprint gives the kids is the reminder that we need each other. We can’t really function, especially happily unless we’re together. We were designed to be in a community, and that’s why camp is my favorite place in the world and that is why almost every kid and counselor who comes to Camp Footprint goes home thinking the same exact thing. It’s a yearly reminder for me to keep on going even though I appear to be pretty confident with my disability.
My disability causes me a lot of internal struggle and I am aware that people are looking at me all the time and I am self-conscious as a result of my disability. Whether I show it on the outside or not, I am. Camp is a reminder that you’re great the way you are.
Elizabeth: There are times I have an internal struggle. Do you bring your struggles to camp and talk about it?
Jonah: Yeah, I am completely honest with the kids and counselors.
Anyone at Camp Footprint will tell you. They know me inside and out. There’s no holding back. At that point, the kids, for the most part, are so mature. They just get it because they deal with struggles. They don’t have the luxury of ignorance. They have to be engaged. And as a result, we get some pretty amazing kids.
Jeana, for example, while she’s amazing, is an example of adults being children locked in adult bodies. So not all adults are mature. That’s why Jeana and I get along so well, but everyone’s on the same level. At Camp Footprint,there’s no separation between admin and counselors and campers. CMT cuts through all of it and we all function on the exact same plane, and I think, as a result, it’s just easier to develop a connection that way.
Chris: Jonah, do you have an experience at Camp Footprint that you can remember where you feel like you really influenced one of the campers, or maybe they were struggling with something?
Jonah: There are two that come to mind. There’s a chapter in my book, Elizabeth, it’s called The Golden Pine Cone, which is kind of my wife and I’s love story basically. Let’s just say it has to do with the Golden Pine Cone, but one year earlier, at camp, we got back from Lake Day, we got back and there’s some downtime where we’re all sitting on blankets on the field and I happened to sit down with a group of about 10 kids. I don’t know why, but somehow the Golden Pinecone story came up. So I told the whole story and now it’s a tradition. Every year on Wednesday afternoon, I find a new group of kids.
I sat down and told them the Golden Pine Cone story.
So far it’s been going over well. That’s an example of sharing my 50-year-old wisdom with these kids any chance I get in any creative way that I can model for them. That no matter what your circumstances, you don’t stop. You keep on going.
The one story that sticks out in my mind is there was a camper who was pretty shy and didn’t want to be in front of others but made it clear that she loved to sing. But she was terrified of singing in front of other people. That year, on Wednesday night at the Night Swim, I think it actually was Jeana who encouraged this kid to come to the edge of the pool and got everyone to be quiet. I was in the pool at the time playing ball with the kids and everyone was quiet. Everyone came over to that side of the pool and this kid sang her song. Wow. An entire song for the camp, and her voice was shaking like nothing you’ve ever heard. She was scared to death, but she was doing it. And the applause that erupted when she was done with her song was the most magical thing I’ve ever seen. I’ll never forget it. Hannah Roberts and I looked at each other and we had tears in our eyes. Unbelievable moment because that’s it, it’s an illustration of what Footprint’s all about. It’s like whatever it is, that’s your mountain to climb. If you climb it during camp, you’re gonna have a lot of people cheering you on. That was kind of a shiny example of that. And you could see this kid just growing. Infinitely in that one moment, and I see that about a hundred times a day. It’s pretty cool.
Elizabeth: I can’t thank you enough for doing what you do. I was skeptical at first of camp when the idea came up, and I told you that many times and throughout the years the feedback has been phenomenal.
So tell me, we have Camp Footprint, but we have other youth programs, so I get confused about Youth Council and Compass and what are we doing at the CMT with all these programs.
Jonah: So my kind of focus in the first few years was to establish infrastructure within the youth program. That was the first big step to that was the youth council. The youth council and a lot of the ideas for the youth program came from one of the youth council members who is about to age out of it in three weeks. But Erin Black came to me one day and she said,”The youth at the CMTA don’t have enough of a voice. We don’t have a seat at the table.” And I said that’s something that ought to be fixed and is fixable. Because I knew that the adults at the CMTA were heart filled. Like you just have to push and so we did.
The youth councils are a group of kids who show themselves to be organized, passionate, and dynamic. Natural leaders.We gather them, we use them as a kind of a youth board of directors to bounce ideas off of. We develop fundraisers, develop programming. A lot of my ideas throughout the year, I’ll bounce off of them because they are the ones representing the very kids who are going to be benefiting hopefully from those ideas. I get a lot of my ideas from the youth council and then I go run with them as things I institute into the youth program. So it’s an invaluable group of kids. We meet once a month. They’re on committees. They have a fundraising committee, a special projects committee, and a social media committee. They do unbelievable work and it’s all voluntary. Navigating the world of CMT or life with CMT with other young adults.
Elizabeth: I just wanted you to say a word or two about Compass. What are the age groups for that?
Jonah: Compass is our newest program for 19 to 29 or 30 years old. The youth program is primarily for 10 to 18-year-olds. I believe the CMTA should be supporting someone from birth to death and everything in between. We do a ton of that already, but there are some holes in our system just because it hasn’t been done yet. So we’re filling those in.
I have a lot of ideas. They have to be futuristic but for the whole infant, toddler, and young kids. phases. We connect parents as an organization, but there’s just even more that I would love to develop around that. Once a kid is 10, they can come to Camp Footprint. They’re involved in programming for the youth program. When they turn eighteen or nineteen, that’s when they start evolving into being young adults and applying for colleges and needing to keep accommodations in mind and dating and sexuality and all of these things. We decided that was the next step in the process. So we created Compass.
It is a monthly meeting online to start with that covers a different topic each month. They’ve done a month on symptoms and what you use to help you. They’ve got a list of unbelievable topics, including accommodations at college, dating, and sexuality. Who better to talk to than other young adults in your position? And young adults especially are a group that was overlooked because I think the branch system that we have developed over many years, tends to run in older adults. So younger adults don’t often flock to that model. It’s not their jam. We wanted to create a jam that was just for them. My huge belief is that I can help to plan it, but I don’t run it. I’ve got Julia Beron who was on your show. Katerina Ballsmith and they are two young adults with CMT who are running this program with my support and help. I want young adults to show up and be served by young adults. The youth movement’s slogan is Youth Empowering Youth. Not a 50-year-old empowering youth. It’s empowering youth.
Chris: So, Jonah, if someone in our audience with CMT, a youth, et cetera, how would they go about learning more about these opportunities to participate in these programs? Would they reach out to you directly? Do they go to the website? What’s the information you can share with the community?
Jonah: They can do one or the other. So my information, I’m hoping you’ll spread it far and wide, is Jonah@cmtausa.org. People can contact me any time of day. The best way to get all the information under the sun in one place is our website, which is CMTAUSA.ORG
Chris: What would you like to leave our listeners with or what advice would you love to give our listeners as we close?
Jonah: I’ve got a small one and a big one. The small one is, and again, it’s biased because I work for the CMTA and I’m paid by the CMTA, but I also see frontline what the CMTA does and accomplishes, and I’ve never been a part of an organization that does it better. I just never have. And so, the small one you can do is keep supporting and that could be financial. It can also be participating in things. It can also be a connection or volunteering, as there are so many ways to support this organization.I’m here to tell you all from the front lines. This organization is worth every minute of your energy and effort and every penny you donate. It’s beautiful because not every organization I’ve worked for I could say that about, but I can about the CMTA.
I guess the bigger one I would say comes directly from my exposure to the youth of the CMTA and my work. Don’t ever believe that the world is a bad place. Yes, the world is going through a lot of issues and we have a world of work to do in our culture and on the way we prioritize and treat each other. But the same thing from the front lines. If you are lucky enough to do the work that I do, you see this side of humanity, this beauty, this strength, man, that same thing as I said about parenting and marriage. We have a lot of challenges on our plate as a community, as a larger world community, but it’s worth the effort. You gotta keep doing the work because the golden moments are still very much alive and there’s nothing but hope in the future as long as you’re willing to stay focused.
Katerina is a bright young college student living with Charcot-Marie-Tooth disease. Officially diagnosed at 17 years old, her symptoms progressed rapidly, leaving her little time to adapt to a physical disability, unrelenting fatigue, chronic pain, leg braces, and a wheelchair/scooter.
Although her CMT symptoms pose many limitations, she’s a fighter and continues to go to college, dance, and play a big part in the CMTA’s new young adult community – Compass. She also is a talented writer, aiming to encourage and inspire others who live with chronic illness, pain, and fatigue.
Listen to her podcast, subscribe to her blog. She’s a gift to our community! xoxo
Yohan and me at the VT Cycle 4 CMT in 2019
The Article
“He has what?” I asked when the neurologist mentioned something about sharks and a
tooth. Dr. Sum, the pediatric neurologist was using words like nerves, genes, muscle
atrophy, and progression. I wasn’t able to quite grasp what he was trying to convey, but it
did not sound good. Something was amiss with my 7-year-old son, Yohan, and now this
ailment had a name – CMT or Charcot-Marie-Tooth disease. When he told us this disease
was incurable and progressive, I completely lost it.
Before he left the room, he gave me a card, “Here is the website for the Charcot-Marie-
Tooth Association (CMTA). Call them for a packet of information. In the meantime,
continue with physical therapy, and occupational therapy. I’ll see Yohan in a year unless
something else crops up.” And that was that!
Neither my husband nor I tested positive for CMT, so why is it that my only child had a
heritable genetic mutation causing a life-changing neuromuscular disease? What did I do
wrong? How will we deal with this as individuals and as a family? What does the future
hold?
I would ask myself these and many other questions over and over again, trying to
understand, striving to make sense of why an innocent child, my only child, had to endure
such challenges so early on in life. Initially, I experienced grief in all its stages—denial,
anger, bargaining, depression, and acceptance—and just when I think acceptance
remained strong in my heart, I had setbacks, reverting to anger and sliding down the
ladder once more.
A World Shattered in a Million Pieces
My world shattered into millions of pieces that day, and I never thought we’d be able to
pick up all the scattered bits to rebuild our dreams, our hopes, and our wishes for Yohan.
I quickly learned this reassessment would not be a one-time project, but a repetitive task
taking time, effort, and a lot of soul searching.
Seeing a child struggling with pain, braces, physical limitations, and obvious differences
made me unspeakably sad. My maternal instincts told me to protect, shelter, cajole and
especially do something—anything—to make the world a friendlier, more secure place
for him. The more his self-esteem plummeted and self-confidence lessened, the more I
would try to make his life easier in any way possible.
Yet, kids are resilient and smart. On some level, Yohan felt my fears and reflected them
back by becoming more and more anxious, less focused, and simply put, a very unhappy
child. Something had to give.
What Else Could We Do?
Lightening his load did not seem to be the answer, and neither did catering to his every
need. In retrospect, I was allowing him to be more dependent on me for everything, and
his teachers in school commented on his lack of autonomy and self-motivation.
My husband and I thought long and hard about what was playing out before our eyes and
decided to get some help from a therapist who counsels families on raising children with
medical issues. Intuitively, we knew what measures needed to be taken, but implementing change is hard
and we desperately needed someone to guide us. Slowly but surely, we stopped treating him as different
and let him experience the world on his terms. For me, this was probably the hardest, but most essential
job I had as a parent of a child with special needs.
Tools for Independence
Working together, my husband and I learned how to provide Yohan with the tools needed
to be independent, self-sufficient, tenacious, and optimistic. After numerous
discussions and a lot of trial and error, we got on the same page and worked as a family
towards common goals. My husband started bringing Yohan on camping trips, desert
excursions, and kayaking adventures, treating him like every other kid on the trip.
I changed my mindset, letting him blow off steam on the way home from school, and
listened without judging by creating a safe space for him to open up and talk. Sure, I still
tended to stray at times, fretting over hypothetical possibilities, living much too far in the
future, and being obsessed with “what ifs”—but a shift was taking hold, and overall, life
became more manageable and much more fun.
When all is said and done, Yohan was not the top athlete in his class, so we had the
opportunity to do things a little differently, creating a life full of enriching and rewarding
experiences. Over the years, our motto has been, “Let’s Make it Happen.” We follow our
dreams, live in the moment, cultivate new experiences and live our best lives possible.
Yohan became an expert archer, was scuba-dive certified, visited the Galapagos Islands,
volunteered many hours to CMTA, and graduated from a first-class University and
Graduate school. He is now working in the field of HR for a local start-up company and
enjoying his success.
Yohan is all grown up now!
Encouragement For Parents
If your child/children have CMT, life can still be enjoyable and fulfilling. There is no one
road map to raising a child with CMT, but here are a couple of key concepts I often share:
-Accept (eventually) the CMT diagnosis – it’s the first step.
Talk about CMT with family and friends; don’t hide it.
Help your children describe what CMT is, in their own words, if asked.
Let your children know it will all be okay because it will.
Embrace challenges and praise your children for doing their best.
Create a safe space for your children to talk about frustrations and anger.
Let go and let them live their lives to the fullest, with autonomy and independence.
Laugh heartily and often. Laughter really is the best medicine.
Involve yourself with the CMTA. We have so many resources for parents and kids alike.
Camp Footprint, the CMTA’s sleep-away summer camp for kids with CMT changes lives. Our volunteers make us shine. Get involved and meet forever friends who understand. Neither your children nor you should deal with this alone. We are better together.
I could not be prouder of Yohan. He’s kind, empathic, funny, and engaging. He rarely complains about his CMT, and lives with the knowledge that every day is a blessing, He has a supportive extended family and friends who love him for his authentic self. If there is just one gift with which I wish to leave him, it is the knowledge that he can achieve his heart’s desire. He just has to believe!
– Elizabeth Ouellette
CMTA Board Member, Elizabeth Ouellette
I’ve been volunteering for CMTA for the past 20 years. Here are a few of my most cherished achievements: I created a school-based program, Teaching Kids About CMT, built the national CMTA Branch network, initiated CMT Awareness week, co-founded the Cycle 4 CMT and co-launched the CMTA’s official podcast CMT 4 Me Podcast with my brother, Chris, who is also on the CMTA Board of Directors.
Last weekend, I planned to meet a friend at 7:45 on Sunday morning. I arrived a little early (growing up, I learned 10 minutes early was considered “on time,” but arriving “on time” meant you were just plain late). My friend pulled up on time (which means she was late – 😊). As her car slid into the empty parking spot, I could see her left hand holding her cell to her left ear, talking, laughing, and talking some more. Five minutes later, she opened the door, walked over to me while still chatting away, covered the speaker part of the phone, and whispered, “Hi!” “Hi,” I whispered back.
I did not tune into her mood or her joy. I felt irritable and impatient; I was stuck in my own reality, and I just wanted to walk, get moving, and get on with the day.
When she was finally ready to walk, yet another woman pulled her truck over to the side of the road to chit-chat with my outgoing friend. “Ugh,” I thought. “More time wasted talking.” My friend has non-stop energy and knows a zillion people, attracting people like bees to honey.
“OMG,” I thought. “We will be here all morning, probably until noon at this rate. I looked at my watch, but it was only 8:25. Why did it seem like I had waited for over an hour? We had plenty of time, but time was not the problem. I was just in a mood. It happens.
The best is yet to come: Impulsively, I made my way over to the truck and blurted out, “Shamika, you remind me of my mom. I love my mom, but whenever we were together, all the homeless people in the downtown area would claw their way to talk to her. She was the kindest soul ever, but we never got to where we were going. I’d end up leaving her with her friends and waiting at a nearby café!” (Wow, where did that come from?)
Joking with the woman in the truck, “And just to be clear, I am not insinuating you remind me of a homeless person….. HAHAHAHA.” I think she got the joke, but honestly, I was acting like a 5-year old child. That comment sort of ended the three-way conversation.
I’ve been working on emotional mastery, with Executive Life Coach Arda Ozdemir, using the POWER method (rise2realize.com) which has been transformational. But that particular day, everything seemed to fly out the window. That day, there was no Pause, Observe, Welcome, Earth, React.
There was only react. Well, back to the drawing board.
Once we were alone, my friend looked at me with disbelief, “What is with you today?” Nothing!! I assured her defensively. “Nothing at all.” And then the memories whooshed back into my consciousness, and the tears started to flow.
This was my Aha moment.
Thinking back to childhood, I remember my mom being uber busy, working long hours, talking on the phone and involved in a million trillion activities. Everything she did was to make a better life for her children.
My mom had to work full-time, as did my dad. With 3 children, a bunch of half brothers and sisters, cousins, aunts, uncles, and grandparents all living in close proximity, neither parent had time to spare. But a 5-year-old doesn’t care about all that. A 5-year-old wants what she wants and, in its absence, creates coping mechanisms to make sense of the world.
When I heard my friend on the phone, taking her time, chatting with others, I went right back to my early memories and lashed out with repressed childhood feelings of loneliness and not feeling seen.
I had dreamed of having a mom who made me lunch, brought me to piano lessons, and waited anxiously as I walked in the door after school. A child understands neither the financial responsibility required to raise a family nor the expectations and responsibilities of adulting.
A year ago, I would not have had the aptitude to look for meaning behind my behavior. I went along, day to day, believing I was born emotionless, one-dimensional, superficial, and lacking in depth. I was not in touch with my authentic self (I did not even know I had an authentic self). I’m only getting to know her now. It’s a delightful process, like a treasure hunt.
Working with Rise 2 Realize Life Coach, Arda Ozdemir, I’ve learned to pause and observe those emotional reactions – ideally – before they happen, connecting with and processing those repressed fears/feelings before responding. I’ve grown so much, but Arda reminds me that this is only the beginning, meaning this work is a marathon, not a race, and I’m okay with that.
Now, back to my friend. I shared my reflections, and she was open to hearing my truth. I apologized for being impatient and explained why I acted so rudely. To her credit, she reflected upon her own life and raised her tendency toward phone conversations with friends/work while her family was around.
To my surprise, she too experienced an AHA moment. She wondered, “Do her friends/family resent her talking on the phone when spending time together?” It was the first time she’d considered how her actions affected her loved ones. At the end of our walk, she planned to check in with them to get their feedback. My shared moment of clarity got her thinking about her own life and habits. How beautiful is that?
Ideally, if you can remember to be more present and pause before reacting, impulsive actions and words can be minimized. But, pausing is the first step, and it takes practice to get out of reactionary fight-or-flight mode. On the app Insight Timer, Arda has a helpful self-observation meditation which has helped me be more present: https://insighttimer.com/ardaozdemir/guided-meditations/self-observation-meditation-2
Try it. It’s not easy to focus the mind, but with practice, you get better. And, the silver lining? It only takes 2-3 minutes. So, take a moment to pause and figure out why you are acting/reacting the way you do. A little bit of self-knowledge goes a very long way.
Eleven years ago, late CMTUS founder, Gretchen Glick and I talked about starting the first ever CMT Awareness Week. The 2 organizations (CMTA and CMTUS) worked collaboratively to get the word out about CMT. At the CMTA, I had posters created, wrote email blasts, and asked our branch leaders to spread awareness through groups across the country.
This first CMT awareness week was so successful, that the following year, we dedicated an entire month to CMT awareness, and somehow, Gretchen got American radio host, Shadoe Stevens, to do a PSA about CMT. Listen to this 29-second clip from 2012:
Eleven years later, it is still hard to explain CMT. I read Kenny Raymond’s latest blog post where he addressed this issue, and he brilliantly defines some of the challenges of explaining what CMT is. Thanks, Kenny B. Raymond for putting your thoughts on paper for reflection. How do you explain CMT? Before you answer, read Kenny’s article and then, come up with your elevator speech and share it in the comments. I’d love to hear your ideas!
Kenny Raymond at Cycle 4 CMT, VT
We All Know the Drill
Exploring the Burgeoning Question: “What is CMT?”
by Kenneth Raymond
“Why are you wearing shin guards? You play soccer?”
“What’s wrong with your hands?”
“What’s wrong with your legs?”
Etc., Etc., Etc.
We all know the drill. The answer to the seemingly never-ending questions involves those three lovely letters, C-M-T. And then, the proverbial follow-up, whether it’s a random person in public or even a healthcare provider, requires us to dig deep in hopes of giving them a straight-to-the-point answer that’ll leave them knowing just enough about our disease to remember the name should they hear it again, all the while hoping we give them enough information to know it’s not a tooth disease and that it has nothing to do with sharks.
What is CMT?
“What is CMT?” I’m always trying to improve on how I answer this question. I can easily rattle off some quick factoids, such as CMT is a heterogeneous group of inheritable peripheral polyneuropathies whose name comes from the three doctors who first described it in 1886: Drs. Charcot, Marie, and Tooth; and this name, CMT, has since become an umbrella term that refers to many different inheritable sensory and/or motor neuropathies. Quick and to the point, right? This doesn’t say much about what the disease is though.
Medically, CMT is a genetically caused neuromuscular disease—neuro because peripheral nerve, muscular because the disease in the peripheral nerves causes symptoms in muscles. Genetically caused because each subtype is caused by a mutation in any one of many different genes.
Medically, CMT is an inheritable multisystem neuromuscular peripheral polyneuropathy. Inheritable because each of the genetic mutations that cause CMT are inheritable. Peripheral because CMT is a disease of the peripheral nerves. Polyneuropathy because CMT affects more than one peripheral nerve at a time (poly), as opposed to only one peripheral nerve (mononeuropathy). Neuropathy because peripheral nerve disease. Then, multisystem because CMT can affect hearing, vision, breathing, genitourinary, and much more, in addition to feet/legs/hands.
Statistically, CMT is the most commonly inherited neuromuscular disease nobody has ever heard of. This one is a weird dichotomy unto itself. CMT is a rare disease by every statistical and modeling measure. At the same time, when it comes to inheritable neuromuscular diseases, in totality, CMT is the most commonly inherited. In this context, common and rare can peacefully coexist even if it seems like they shouldn’t.
These above are just a select few examples of how CMT can be described. All of these descriptions are fine and dandy, but not only are these difficult to remember, firing off any of them to Jane Q. Public tends to render confusion about a disease they’ve never heard of. Is there a viable solution—a grand unifying answer, so to speak?
The Elevator Speech
I’m often asked to give my “45-second elevator speech” on what CMT is. My response typically hits several talking points and is usually along the lines of “CMT stands for Charcot-Marie-Tooth disease and is a rare inheritable neuromuscular peripheral neuropathy named after the three doctors who first described it more than 130 years ago. Although rare by definition, affecting only 1 in every 2,500 people, and totaling about 3 million people worldwide, CMT is the most commonly inherited peripheral nervous system disease. CMT causes the peripheral nerves to stop working correctly; and this leads to muscle weakness and atrophy, joint changes, difficulty with walking, and hand issues. Some who have CMT have breathing issues, hearing impairment, vision problems, bladder issues, and GI issues. The disease progressively worsens over one’s lifetime, there is currently no treatment, the disease can’t be cured, and it affects everybody very differently from one another.” Sometimes, people will ask follow-up questions. Other times, we part ways with only a, “whoa,” and maybe they’ll recognize the name the next time they hear it.
My “elevator speech” has been a go-to for many years, having evolved only slightly since my initial CMT diagnosis. It’s very easy for me to throw it out there anytime I’m asked. Does it say enough about what CMT is as a whole that it could be adopted by anybody who needs a quick go-to description? Until a week ago, I thought it did and I thought it could. What changed?
Bicyclists as a Catalyst
Kate Lair and Kenny Raymond
For the first time, I attended the Charcot-Marie-Tooth Association’s Cycle 4 CMT fundraising event held annually the last weekend of August in Charlotte, Vermont. This event is huge and people from all over the place, not just locals, attend and/or participate. I met and spoke with many CMTers. Some CMTers were cycling participants riding a treacherous 40-mile course through the western Vermont mountains even though there were shorter less-challenging routes. Some CMTers were there to participate in non-cycling activities. Some were event volunteers. Some were parents who do not have CMT, but their child does (or children do). Some were members of the CMTA leadership and social media teams.
Some of the CMTers at Cycle 4 CMT used wheelchairs, canes, walkers, etc. Some CMTers wore leg braces. Some CMTers had breathing issues. Some CMTers had severely twisted and deformed feet. Some CMTers had hearing loss. Some CMTers had speech impairment. Some CMTers had <fill in the blank>. I’m confident there were many hidden symptoms that went unmentioned and unnoticed. Without a doubt, it was the most diverse single-source representation of what CMT is that I have experienced in-person. As I spoke with CMTers and as I looked around, it became apparent that my go-to elevator speech is grossly inadequate and under-represents what CMT is.
It’s well established that CMT can and does affect everybody differently, and even within the same family. CMT can cause many things. Not everybody who has CMT will experience all symptoms of CMT. The mix of symptoms, the severity of individual symptoms, the rate of disease progression, and the overall disease severity can be quite different for every CMTer. What one CMTer experiences cannot be used to gauge or to predict what the disease will be for the next CMTer, regardless of subtype. It’s one thing for me to read it, and another for me to witness these concepts firsthand.
Is There a Solution for the Question?
What is CMT? The answer to that question, as it turns out, is quite different for every CMTer. My CMT is different than somebody else’s CMT. CMT, for me, looks quite different than does CMT for another. CMT, for me, is twisted, contorted, crooked feet that have led to tendons tearing requiring corrective reconstruction surgery of my right foot (and upcoming surgery for my left foot). CMT, for me, is weakened hands that easily cramp, a knee that used to dislocate before corrective surgery, bilateral hearing loss, unrelenting fatigue, chronic whole-body pain, progressively weakening upper leg muscles, spine changes (kyphoscoliosis), premature degenerative joint changes, speech/vocal difficulties, and for me, CMT is breathing issues. For another CMTer, CMT is wheelchair dependency, is an inability to hold and use a pen or pencil, is 24/7 mechanical ventilation via tracheostomy, and is total deafness. Yet, for another, CMT is none of these things, or a is a combination of these.
What is CMT? True to CMT, there isn’t a one-size-fits-all answer. The answer to the proverbial question is unique to the CMTer who is asked. The answer is even unique to the healthcare provider and to the scientific investigator. There are wrong answers to the question, such as a suggestion that CMT is an autoimmune disease. While CMT might share symptoms with some autoimmune diseases, such as Multiple Sclerosis (MS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) for example, CMT is decidedly not an autoimmune disease. Nonetheless, the answer to the burgeoning question is dependent on what CMT looks like for the one who’s giving the answer.
If you were to line up ten random CMTers—somebody who has CMT or somebody whose loved one has CMT, and ask each, “what is CMT?” each of the ten answers are likely going to be very different from one another. The differences are not born of inaccuracy or of a misunderstanding of their disease. The differences instead come from how differently CMT looks for each individual and from how each person individually experiences CMT.
What is CMT? For me, CMT is a cruel and often debilitating neuromuscular disease that looks very different from person-to-person. For me, what was once an easy answer to a complex question, or what was a complex answer to an easy question, has become exponentially more difficult to answer. As a CMTer, it’s easy to answer the question by simply describing what CMT looks like for me. As an advocate, however, I’ve learned my “45-second elevator speech,” while it gives a lot of information, is a disservice to the CMT community as a whole. The solution? I resolve to do better. I have to do better. I will do better.
About the Author
Kenneth Raymond was first diagnosed clinically with CMT1 in late 2002, at the age of 29. He was genetically confirmed to have CMT1A a year later. Kenneth has since devoted his life to studying, researching, and learning all things CMT, with an emphasis on the genetics of CMT as they relate to everyday CMTers. As a member of the Charcot-Marie-Tooth Association’s Advisory Board, Kenneth serves as a CMT genetics expert, a CMT-related respiratory impairment expert, and as a CMT advocate who is committed to raising CMT awareness through fact-based information rooted in the latest understandings of CMT. Kenneth has just published,
Charcot-Marie-Tooth Disease Gene and Subtype Discovery: The Complete Bibliography – Fall 2022 Release: A Desk Reference for the Everyday CMTer, the Practicing Clinician, and the CMT Researcher Paperback which is available on Amazon. Kenny also has an excellent website and blog to check out: expertsincmt.com
Kenneth Raymond is an administrator of several Facebook groups. He helps people with their CMT questions, especially those related to breathing and genetics. The CMTA is fortunate to have such a well-versed, well-educated Advisory Board member willing to work tirelessly for the CMTA community!
Comin’ at you! What do you get when you mix chaotic creativity with organized comedy? You get the #1 CMT Podcast available today: CMT 4 Me. Despite being polar opposites, this brother-sister team brings it all together in an exciting and informative series focused on all aspects of CMT. Meet Chris and LizO (Chris and Elizabeth Ouellette), dedicated siblings on a mission to magnify the voices of individuals with CMT, share their challenges and success stories, and raise awareness of Charcot-Marie-Tooth disease.
Highlights
As kids, they learned homelessness was not someone else’s problem.
Giving back is so much more than pizza and donuts for Halloween.
Chris: One, two, three. Hello, everyone. This is Chris and Liz O.
LizO: We’re a brother/sister team.
Chris: And, on behalf of the Charcot-Marie-Tooth Association, AKA CMTA, we are coming at you.
LizO: Coming at you not from coast to coast, from the East Coast. We’re both in Vermont, and I’m here for a couple more days.
Chris: Nice. We’re at our camp in beautiful Colchester, Vermont on the beach of Lake Champlain.
View From Camp on Lake Champlain
LizO: Yeah, it’s nice.
Chris: So, Liz O, guess what?
LizO: What?
Chris: This is another fantastic episode of our famous podcast named what?
LizO: CMT, the number four, me, CMT4Me.
Chris: That’s right. What is this podcast all about? It is a comprehensive podcast covering all aspects of CMT, the voice of individuals living with CMT, their challenges, and more importantly, their inspirational stories. We will also cover research updates, fundraising, and interviews with the CMTA community, such as board members, branch leaders, CMTA leaders, but overall, an opportunity to spread awareness through the eyes of those with CMT. So, Liz O, I’m pretty excited about today’s podcast. Totally different, right? This podcast is going to focus on what?
LizO: Me and you. Who are we? Why are we doing this? Why are we even doing the CMT4Me Podcast? What is our relationship? What are we all about?
Chris: That is right, folks.
LizO: Should we start?
Chris: Yeah, that is right. There is a lot there, and we’ve been thinking about this for quite some time. We really wanted our listeners to understand a little bit more about Liz O and I and our past, our history, why we’re engaged in the CMTA, as Liz O said, why we do this podcast. What I’m hoping is if you folks have questions, you’re able to send those in, and we can answer them on future podcasts. So, where do we start, Liz O?
LizO: Well, do you want to start by saying how I got involved in the CMTA?
Chris: No, I don’t want to start there at all.
LizO: Okay, well then why’d you just ask me?
Chris: Just because I love to ask you a question and then totally, we don’t do it. So, I was thinking … Let’s start a little bit, right? So, I’d like to go back to kind of our upbringing. We were both born here in Vermont.
LizO: Oh, way back.
Chris: We’re going to go way back to the beginning. Just so our listeners know, I am currently … Actually, I’m going to be 56.
LizO: Oh, now we’re talking about you. What the hell? I just started, me, and then you’re like, “Well, I’m going to be.” It’s not about you. It’s about us.
Chris: Right, so this is the Chris Podcast, and you won’t learn much about Liz O, but you’re going to learn a lot about me. So, it’s perfect. I’m right in my element, right in my spot.
LizO: I should have never agreed to this podcast.
Chris : I know, I know.
LizO: Okay, let’s get going. Come on.
Chris: All right, let’s do it. Go ahead.
LizO: No, go ahead. You have this great idea.
Chris: No, it just made me think, right? I’ll be 56 in July. We were born in beautiful Burlington, Vermont. In reflection, it really made me think, what’s the story? And, what’s the connection? One thing about our upbringing, and I think it really ties into the fact that we’re engaged with the CMTA. We’re engaged with the CMT community. And, we’ll touch base upon our fundraiser, Cycle4CMT, going into its ninth year. But, really there’s a pretty good background in terms of why we are engaged and I think why we give back and where that really came from, right? You see where I’m going with this, Liz O?
LizO: Yeah, I do. I do.
Chris: And, what are some of your thoughts on why I think we have this foundation in terms of giving back to the community in a number of different ways over the years? Where’d that come from?
LizO: Yeah, I think the spirit of volunteerism, it came from … I don’t even know if that’s a word, but-
Chris: I was just going to say, “Is that a word?”
LizO Cool. It’s volunteerism. Anyway, it is today. And, it goes back to our mom who has always been very generous, giving, and not just with her family, but with people she doesn’t even know. This is an example, and I know you have many, many more, but at Halloween, everybody loved our house at Halloween, because she just didn’t give a Reese’s Peanut Butter Cup or a quarter. She would order Domino’s pizza, and everybody would just come and chow down pizza, go out. It was just so much fun, and people remember that to this day.
Chris: I still have friends of mine that are in their 50s, that they go, “Oh, my gosh. How’s your mom doing? I remember those Halloween nights.” And, she also would take the popcorn machine from, at that time, the candy store that our folks owned down on Church Street and be giving out popcorn as well. But, people loved that. Then, I remember we used to have to go out and pick up all the Domino’s Pizza boxes all around the street, because we learned the entire Burlington area. But, it was pretty cool. But, that was her thought, right? Doing something different, right? And, what more could she do? Like you said, there’s so many stories. I think about if you and I ever went with our mom, Bev, to Church Street downtown, one thing is everybody would run up to her. Everybody knew her, right? And, she was always trying to help people, and I remember-
LizO: Not only people that we knew from school, but she knew a lot of the homeless. She knew a lot of the people that didn’t have a lot of money, because that was her focus. She wanted to help this community in Burlington, right?
Chris : Yeah.
LizO: She was always out there.
Chris: That was a full time job.
LizO: Yeah, and she has a degree in psychology, and she would talk to these people. But, for us growing up, I hated it at first. Looking back, I didn’t like it. I didn’t hate it, but it was just, where do we have to have Thanksgiving, at St. Jude’s? This is a rooming house she had with people that didn’t have tons of money. It was Section 8 or whatever. And, we had Thanksgiving, but we learned to accept people of all kinds. It doesn’t matter about their financial background, right?
Chris: Yeah, yeah, and I think it was also her way of telling us, A, be fortunate you have a family, right? And, back to that Thanksgiving is about giving back. So, as a family, we will together give back to the community. And, I do. I remember that. I was like, “Oh, my God.” I remember this Thanksgiving, and she decided that, and we’re around all these 80, 90 year old people. What fun, though? She was so humorous. She dumped all these apples in this big container filled with water, and the elderly folks were bobbing for apples. She looks at me, she’s like, “Your turn.” I’m like, “There is no way I’m sticking my mouth in that water.”
LizO: I remember that.
Chris: But, it was great. It was adding fun, and the people loved it.
LizO: Mom is a lot of fun.
Chris: So, I agree with you. She is a lot of fun, but I remember it was that reflection of leaving and being like, “Though I didn’t want to go, that was a good day.”
LizO: It was.
LizO: Right, I am too, and I think life, honestly, and I know this was instilled in us early on, but I think life is about giving back. It’s about giving back to the community, and I take a lot of pride in giving back. Just to volunteer and to help a group of people is a gift in itself. It just makes you feel good, and you know that you can make a difference, right?
Chris : Totally.
LizO: That’s where the CMTA comes in.
Chris: Yeah, and I think talking about that is the CMTA and just thinking about Yohan and his diagnosis and really how you personally have been involved with CMT and the CMTA for how many years now?
LizO So, it will be 20 years in December of 2022.
2012 – Joined Board of Directors, CMTA
Chris: And, folks, keep that in mind. That is 20-plus years total volunteering. When I say volunteering with Liz O, this isn’t five hours a week. This is 40, 50 hours a week, weekends, never complains, totally engaged. And, this is what her life has become. I will speak on behalf of those with CMT and people in the CMTA, so fortunate to have someone like that driving to advance research, help find a cure, spread awareness. And, the stories go on and on of what she’s done, but that’s pretty in-cresible. In-cresible? You like that, I just made that word up, in-cresible.
LizO: Just go with it.
Chris: I love it. Hey, instead of incredible, that’s in-cresible. Sweet, okay, I got that down. But, anyways, very impressive. That’s giving back.
LizO: So, when Yohan was born, we had no idea. We don’t have CMT in our family, and so he started exhibiting signs early on just with light sensitivity and walking on his toes. At seven, he was diagnosed, and as parents, we didn’t know what Charcot-Marie-Tooth was. We had never heard of it, and there were very few, few, few resources at the time. They gave us the address of the Charcot-Marie-Tooth Association. At that time, we had just moved from France to California, and I decided to go back and get a degree in psychology.
LizO: When I was done with that degree, we learned that Yohan has CMT. So, I’m like, “How can I use this degree?” It was sort of just meant to be. So, I just got involved, and there were two people working at the CMTA 20 years ago. We knew a little bit about 1A and other types, but nothing to the extent. We didn’t have the resources at all of what we have today. So, we started building the branch network that we have now and awareness month. It was so fun at that time, because we didn’t have much. With Jeana Sweeney, we just built out the whole organization to all these fantastic resources and met so many people. So, I do this for Yohan, but I just feel like the CMT community is my family.
Chris: Okay, that’s what it is. Yeah, no, it’s pretty impressive, pretty impressive when you think back. I come back to Yohan’s diagnosis and/or my first involvement with CMT, and I actually do recall. I think it was on a phone call where you said, “Hey, Yohan and CMT,” and my first comment was, “What do you mean? What’s CMT? What do you mean there’s no cure? You know where science is. There has to be a cure, and what does this mean for him?” And, it really took me, I think, quite a while to understand what CMT was and/or how that may affect Yohan. Obviously, you guys are in California, so I didn’t see you all the time. All I could hear are some stories about wearing braces and potential surgeries in the future.
Serial Casted -short-term success
Post Surgery – Foot reconstruction surgery
Chris: Then, you guys would come to Vermont, and he was very young. You really couldn’t notice very many symptoms being expressed, but also knowing that there was this underlying kind of diagnosis that you guys were trying to navigate through and also trying to explain to the family. So, it was really … Then, the fact, I think for me was every summer coming to Vermont, and he would just … Every year, he’s older and older. Then, I could start over a period of time seeing some of these subtle or slight changes from one year to the next. That brings up the components of, at a young age, hey, let’s go for this walk. Hey, let’s go for this hike. Oh, my God. You’ve really got to come in the winter and try skiing or snowboarding. That’ll be cool.
Skiing was a cherished moment in time.
Chris: And, he engaged in those items. Then, I could see over a period of time, it was like, well, I really don’t necessarily have an interest in doing that. Maybe that was his way to express some of the challenges, though I knew he would want to do it. I could just see that over a period of time, based on his symptoms, that got me a lot more closer to what CMT is and really grasping what this disorder is. I would think it’s probably challenging when you talk to someone who doesn’t know anyone with CMT or what that is. It might be hard for them to make that connection to really what it is.
LizO: It a little challenging, because I will say, “My son has this neuromuscular disorder,” and then they see him, and he looks fine. What are you talking about? You’re totally the making this up, but let’s just go through some of the symptoms that people with CMT have. Chronic pain, burning nerve pain, no feeling, because it affects the sensory nerve, so no feeling in your lower legs or your feet, in your hands. Your muscles start to atrophy, because the nerves don’t work anymore, so people get claw hands, claw toes. They have tremors. It can affect your back, scoliosis, kyphosis. Some people are affected with their vocal cords, their hearing. More people than I thought are affected by their breathing. People need surgeries and the feet don’t fit into the high …
Some of the many CMT symptoms
LizO They either have really high arch feet or totally flat feet, and the toes curl. It’s a challenge, and the biggest challenge when Yohan was first diagnosed, they thought he had cerebral palsy. So, I’m like, “Okay, it’s very mild. It’s not progressive.” Then, they came back with a CMT diagnosis, and it’s a progressive disease. So, it’s not going to get better. It’s not getting better. There are treatments like exercise or physical therapy or occupational therapy or surgery, but it’s going to keep getting worse until we find a cure. So, that’s what I’m all about, trying to find research and spread awareness and increase the resources we have. We’re doing a great job in that, but I’m still frustrated that we don’t have anything to stop the progression. But, we’ll get there.
Chris: I think what also hit me really hard in terms of what CMT is, is this was years ago, I think probably in 2014 or so. I think that’s when I joined the board of the CMTA, and I went to a conference in Boston. That was my first conference. So, I’d been kind of exposed to what CMT is with Yohan, not really engaged with anyone else that had CMT and would read stories, positive and negative, et cetera. But, I’ll tell you, going to this conference in Boston, and you were there, and I can totally remember walking out of there that I now have a much better appreciation and understanding of CMT. A lot of things, if you’re not engaged with CMT, I remember the first thing I did. I meet someone over at a table getting coffee, and I go to forcefully do the American awesome-
LizO: Handshake.
Chris: Manly handshake, and I grabbed that individual’s wrist, and I’m serious, I felt like I broke their wrist. They just couldn’t really return that handshake that I was so accustomed to and brought up doing in terms of a standard greeting. Then, I looked around the room, and I could see mothers or daughters together in wheelchairs or people having difficulty walking, et cetera. It was really, really mind blowing. I think that was really the turning point for me, that not only through our family and Yohan, but really starting to think about what else can I do to give back to this community? And, that really prompted a lot of different actions, further involvement for me in the board, more engaged, I think, with Yohan, and as we’ll talk about is that leaning into which I’ll say, our ninth annual coming up in August Cycle4CMT fundraiser that I’m really proud of that’s raised over $1.7 million for research. That story in itself, which leads to a number of different topics, is between you and I, is how that fundraiser got started, right?
LizO Right, and before you go into that, I just want to say I’m looking at that picture in back of you, and I see you and Yohan. Yohan was here in Vermont, and I believe there’s always a silver lining in every situation, any situation that’s tough. The silver lining is that you and Yohan have forged such a strong relationship. He thinks the world of you, and I can’t thank you enough for getting involved, because we felt pretty alone in this disease. For you to come out and spend so much time and energy and get the word out and talk about it and understand it means the world to me. But, it also means the world to Yohan, and I can’t thank you enough. Really, he was here, and you guys went to breakfast. He goes, “I think I just want to be with Funcle Chris,” fun uncle. And, you guys just laughing in sync, it just means the world to me. So, thank you for being involved, and I wish more families would get involved in the lives of others with CMT.
Chris and Funcle Chris 2022
Chris: I do. I love him. He’s so awesome. We have such a great relationship, a lot of respect for him. I can’t imagine not doing some of these things. I think too that that relationship with Yohan and the connection to CMT has also prompted my dedication to CMT, not only for him, but as I’m more engaged in the community, with the three plus million people worldwide, and really trying to think of how we can reach those individuals, how we can spread awareness, and what more we can do any way possible. And, the key is funding research, finding a cure for this disorder at some point in time. I do agree with you, Liz O. I think at some point, we will get there. And, you and I were talking about it this morning. The CMTA is a relatively small association. I think we’ve committed well over $20 million in research to date, but it takes so much money, right? It takes so much money just to get to clinical trials, and then the failure rate of clinical trials is very high. But-
LizO: I think the statistics were it takes between 400 million and one billion dollars to bring a drug to market. But, that doesn’t mean the CMTA has to put that much in. We have really attracted pharmaceutical companies and biotech companies. There are more people today working on CMT than ever before, and it will only keep increasing. So, there’s a lot of hope if we can get them to get more involved or we have something very promising. They can take that and bring it to market, because they have the big dollars, right?
Chris Exactly, and going back, Liz O, too, I do want to talk about the inception of the Cycle4CMT fundraising.
LizO: Oh, yeah, let’s talk about that Bahamas trip.
Chris: Bahamas trip, and folks, listeners, we’ll touch base a little bit upon Liz O and I in terms of our relationship, but what we would do as a family I thought is very important is to travel at least once or twice a year, which I don’t say that lightly, very fortunate that we were able to do that. And, I definitely do not take that for granted.
LiizO Can I say something?
Chris Yeah.
LizO I just want to say that your kids had to follow a strict schedule for school, but we would just take Yohan out of school, because early on, we decided that seeing the world is educational, and we would do as many trips as we could. Because, honestly at the time, and we still don’t know what his capabilities will be in the future. And, I’m really, really glad we did that. And, we did take him out of school. Sometimes, he had homework and everything on vacation, but what he learned and the experiences he had, it’s just incredible, and we’ll never get those back. So, I’m so fortunate to be able to have done that with him, really.
On an unofficial school vacation, Yohan got scuba certified!
Chris: Yeah, it’s cool. And, the fact is right when we would travel, Yohan, he’d do a lot of things. Then, as I stated earlier in this podcast, I would notice he would be able to do less items. He would still have a great time on vacation, but our focus turned a little bit to what was he capable of doing. And, it hit me, and it was 2014. We were in The Bahamas, me, you, Yohan, my wife, Mia, our son, Warren, and daughter, Lila. And, we are sitting there in a Starbucks having coffee, and I was just looking at Yohan, because his feet were all scraped as he was walking around the pool. His water shoes, he had-
LizO: Well, the day before, because I’m so scattered, I got there a day before you and left the day earlier, because I messed up the schedule and the days.
Chris: I forgot that.
LizO: So, that first day we got there, I’m like, “Let’s go in the pool.” And, we had these water shoes. Since he has pinky toes up in claw, we put holes in the pinky toe, and he was out there. He was in the pool and the lazy river, walking all around, and he got out. Since he has no feeling in his feet initially, he looked down. His toes were raw. He had scraped all the skin off his toes, and then the pain set in. That set us up for a limited, limiting vacation, and it was awful.
Chris: Yeah, yeah, no, I remember that. So, we’re sitting there having coffee, and I remember I had just started cycling at that point. I started chatting with you and with everyone there, I said, “What more?” It was going in my mind actually, before I expressed that. I was thinking, what can we be doing, right? I don’t want to just sit on the sidelines. There has to be something we could do. Thank God, you were very knowledgeable because you were engaged with the CMTA and talking about research. I started to think, hey, maybe we put on a cycling fundraiser. And, I have never done any fundraising. I think maybe you were engaged in some fundraising.
LizO: Oh, yeah, I did.
Chris: Maybe it was through branches and things like that, but I was totally new, new to biking. And, I remember saying, “Well.” You asked me what my thought is. I was like, “I don’t know. I just want to tell maybe 10 of my friends, and we’ll try to raise some money, and I’ll go down [inaudible 00:25:59] Vermont and sit on the beach afterwards, and we’ll cook some hamburgers and have a beer or so. Maybe we’ll raise a couple hundred dollars, and I can start there. Then, with the sister/brother team, with your energy, and I think that translated to my energy where, well, that’s not enough, right? What can we do? And, behold, we launched the first Cycle4CMT event in October. It was October that first year in 2014 in Vermont. It was cold.
LizO: It was cold.
Chris: But, it was cool, because we had probably 80 plus participants, and that event was more kind of family and friends oriented. I went out and I posted some cycling routes, and I had these little tiny signs on the side of the road that had arrows to go right or left. I didn’t realize, well, you’re probably at times going downhill, could be going 25, 30 miles an hour. Maybe you won’t. And, people didn’t even see the signs. Everybody went off course.
LizO: Remember, Kevin Thibodeau, he left, and we didn’t even know where he was. And, he came back miles later, not in shape or anything.
Chris: Totally.
LizO: But, you know what’s great is everybody was laughing about it.
LizO: Everybody understood. That’s great. There were two people with CMT, and fast forward, if you go to the eighth annual, we have a lot of people with CMT attending, walking, cycling. It’s really become quite big, and we have an event this year in Wisconsin. Then, we have, well, not an event. We have a ride in Wisconsin, and we have a ride in San Francisco and people doing their own thing. So, it’s really expanding, and it’s really exciting.
1st Annual Cycle 4 CMT
Chris: They were.
Cycle 4 CMT 1st Annual
.
Chris: Yeah, and it’s cool to reflect back, thinking, sitting in the coffee shop, talking about a fundraiser, and where we are today. As I reference, that has just grown. The attendance, we usually at the signature event in Vermont, which is now always the Sunday prior, the week prior to Labor Day, we usually have about 200 plus participants. There are new faces every year. There are more people coming that have CMT. People go out for a ride. We have a great breakfast. We have a full catered meal. We have live music. We enjoy some local craft beer and cider. We always try to bring in researchers, our leading scientists to talk about where we are in the research front. The cool thing is then we just have a great silent auction. That’s very powerful here in Vermont, right? The community is so engaged. Probably, we’ve had at times 100 silent auction items, ranging from people donating skis, to hiking shoes, to biking jerseys, to gift certificates, to hotels, and you name it. That’s a fun, but not an easy feat to obtain those silent auction items.
Paul Kang gives a speech in Juliana’s honor
Juliana Snow lost her life to CMT at age 5
LizO: No, the Cycle4CMT is really a lot of work, and every year after the event, we’re just like, “Should we do this next year? It’s taking so much time.” And, what I remember is you have people like Paul Kang and Stephen Lee coming from Washington and Connecticut and talking about little Juliana who died at five years old from CMT. It’s very rare to die from CMT, but it happens. Stephen flew all the way here, and then we had the interns, Emily and Erin.
Emmily and Erin
Chris: They’re awesome.
LizO: They both have CMT, and they’re so, so motivational and inspirational and just great young women. Then, when we go, “Oh, my gosh, we’re so tired.” You want to tell the story of Riley, Riley who came up to you?
Chris: Oh, boy, I’m serious, folks. I’m sure a number of you have done fundraising. It’s not an easy feat, and I’m not saying that to give Liz O and I credit at all. Like Liz O said, every year, we’re like, “Okay, that was the last event.”
LizO: That’s the last one.
Chris: “That was the last one. We’re totally exhausted.” I know when everyone leaves the event on Sunday, we’re laying on the grass, and now we still have to take everything down. No one can speak. We’re totally tired. But, to me, that’s part of it, right? You have to have some blood, sweat, and tears. These things shouldn’t be easy to begin with, but Riley, who’s so awesome, and-
Riley
LizO: He’s from Vermont, Essex.
Chris: He’s from Vermont, and how old is he now, Liz O?
LizO: I don’t know. He must be 13, 14.
Chris: Yeah, so Riley, and I don’t know how this got out there, but he at the time, maybe he was eight or nine. And, I’m talking to someone at the event, and Riley pulls on my shirt, and he says to me-
LizO: And, wait, wait, wait. So, Riley’s pretty affected by CMT.
Chris: He is.
LizO: He’s a CMT type four, so that’s two genes causing CMT.
Chris: Yeah, he’s in a wheelchair.
LizO: Now, he is is.
Chris: Or, now. He was wearing braces, I think at the time, needed assistance with walking, and made it over to me, and pulled on my shirt. And, I looked down at this little, little boy with his glasses and big eyes. He said, I think he called me Chris, which was great, “Chris, someone said that this might be the last year that you” … Sorry, folks. This is my emotional point. He said, “I heard you might not do this event anymore.” And, I looked at him in the eyes, and I could see his condition. I just was like, “Riley, this will not be our last event.” It just showed me how important that event was to him and to others. I think that has been not only with Yohan, but the CMT community and folks like Riley, that has driven that kind of tiredness and not wanting to do the event into passion and dedication to continue to move forward, and even though we don’t have a cure today, to stay positive.
Riley Ashe and Yohan at Camp Footprint
Chris: When you can see someone with CMT really have the opportunity to enjoy that event, and as I always say to Liz O, that event, as I reference, is not feedback for Liz O and I in terms of what we do. That event is for people with CMT, and that is why we do it. It’s their environment. It’s their voice. It’s giving them updates on research and doing whatever we can to spread awareness and help raise the necessary money so we can continue on this research path. So, that was inspirational, and it’s very interesting. It’s been probably five years, and every time that story comes up, I just start crying.
LizO: Well, and then Riley spoke at one of the events, and hopefully, he’ll be at the event this year. He probably will. His mom [inaudible 00:33:04] is a good friend. The other thing is he attend attends Camp Footprint, and that’s been life changing for him, but I just remember talking about … He didn’t want to lose the ability to walk, and he has. And, that’s the progressive nature of CMT, and we need to stop CMT. We Need to stop the progression.
Chris: The other thing that hits me at these events as well is the positive energy.
LizO: So fun.
Chris: CMT can have a major impact, however I just find such a positive environment with those that do have CMT. It gives you encouragement and strength to continue to try to fundraise and find a cure, because it’s just such an awesome community. You don’t find people that are sitting there, looking for sympathy. They are talking about what they have accomplished and what they can do. Some folks say, “Hey, if I had a chance” … I don’t know if I would say … It’s hard, right? Some folks would be like, “I don’t know if I’d say. Obviously, I wouldn’t want CMT, but CMT has really made me into this incredible person.” And, that is very heartfelt, warming, and touching to me, to hear those stories.
Chris: So, it’s a great environment. And, folks, this is definitely a pitch for the Cycle4CMT event as well. If you have a chance to get to that signature Vermont event, you’ll be blown away by it. It is beautiful. It’s a great environment. It is a lot of fun. It’s a great cause. On top of that, as Liz O said, there are rides going on throughout the country. You can go to the Cycle4CMT.com website, learn all about the event. But, again that event is for you, and if you can get out there and help fundraise and spread awareness, that’s our goal, and we’d love to have you.
LizO: And, this comes back to what I was thinking. You said people are so positive, and we have such a great group of people who Cycle4CMT. But, I think part of that is talking about giving back, instead of sitting there and waiting for somebody else to do it. Get involved in any way you can, so you’re part of progress. You’re going to be part of our solution. You, your money, even if it’s just a little bit, if everybody just gave a little bit, we’d probably have a cure by now. So, honestly, I just think I can’t sit by and watch Yohan progress or my friends, Bethany, progress, or Jeana, or people I’ve come to love, and Kenny B. I can’t do that. I have to be involved, and all these people are involved, and it feels good to give back. And, it feels good to see progress when we do.
Chris: Yeah, yeah, totally. So, Liz O, you’re talking, and I’m just thinking about our relationship, right? We don’t see each other that frequently, maybe a couple weeks each year. Hopefully, that’ll continue to grow as we-
LizO: You’re too busy. You’re too busy. Every time I call, you’re like, “Yeah, okay.” And, I’m like, “Hey, so” … I’ve got to go. Bye. Got to go. Bye. Got to go. Bye.
Chris: But, you’re busy as well, and it’s interesting. It is a good team. You and I are really two totally different people, but there are a lot of common characteristics as well. I’m going to just give a little bit of feedback, folks, to get you the details of Liz O. And, I would say number one, lot of fun, right? Always laughing, very, very intelligent, very well spoken. We’ve already talked about how she gives back, but on the side, she’s totally scattered, totally scattered. I am always like, “She makes it through the day. She does. I don’t know how she does.
Chris: And, here’s a great example. What does she do yesterday? Comes down to camp. She’s like, “I am going swimming.” I’m like, “Perfect. Go swimming.” So, she puts her bathing suit on. I’m doing something on my iPad, and she comes back out of the lake, and she’s like, “I can’t see anything. I can’t see anything.” I’m like, “What?” She goes, “Did I just jump in the lake with my glasses on?” I’m like, “I don’t know. I don’t know.” So, I’m like, “Here we go.” So, I go out in the lake. I can see these footprints in the sand. I go way out there, and sure enough, there-
LizO: I’m trying to help, and I can’t see anything.
Chris: Yeah, she can’t see anything anyways.
LizO: I’m stirring up all the sand.
Chris: Yeah, so there are glasses on the bottom of the lake, which I recover for her and continue to move on. But, that is not a surprise. There are probably five to 10 of those items that go on through the day. Can’t find her car keys. Can’t find her phone.
LizO: Never.
ChrisO: She goes on a trip with Gilles, who is our chairman of the CMTA, and what does she do? She loses the car keys in the desert, and he’s out horseback riding. She’s going for a hike, and so thank God, she posted her walk on this app called Strava, and Gilles followed it on Strava and found the rental keys. But, my point is she makes it through in that type of environment, and she’s not scattered on other things. But, those type of things, which aren’t real important to her, you know what I mean? There’s other things, and she gets through it. And, I am a little bit different. I’m not saying I’m not scattered, but I’m a little bit different.
LizO: No, no, no. You’re very different. Listen to this. (singing). I can’t even remember the tune now. (singing).
Chris: M.A.S.H.?
LizO: No, maybe it is. But, I meant The Odd Couple. We’re sort of like-
Chris: Oh, that is The Odd Couple.
LizO: Oscar and Felix.
Chris is Felix – Lizo is Oscar
Chris: Good point.
LizO: I’m Oscar. You’re Felix.
Chris: Totally.
LizO: So, you’re very organized. You’re very driven. And, you are very structured, and I am not. I am driven. That’s what we have in common, but you’ve always been like that, though. I just remember waking up in the morning, and you were nine. What nine year old looks outside of the window and goes, “Oh, my God, the grass needs to be mowed.” And, you get out there, maybe 10. You’re mowing the grass, and I’m like, “What grass? Who cares? Have it weeds.” It’s so interesting, and I remember I was kind of nervous about spending the night at camp here with you, because-
ChrisO: Well, I was nervous as well.
LizO: I know if I have any crumbs on the counter, he’s going to freak. I don’t know if I’m doing the dishes right. I’m just trying to respect your space. The other day, and I felt bad about this afterwards, but I don’t think of these things. I get a box. We’re over at your house. You have white furniture, which I think is stupid.
Chris: She gets the box out of the garage, folks, my garage that has been … It’s all dusty and things like that.
LizO: It’s not dirty.
Chris: What does she do? She’s like, “Can I have use this box to ship items?” I’m like, “Sure.” So, then what proceeds to happen?
LizO: Then, I take the box and put it on the white furniture and start packing the box. He goes, “Could you please take that box off the furniture?” I’m like, “Why?” I had no idea. It didn’t even dawn on me that the box was dirty or had dust on it. Then, a little aggressively, I kind of rubbed the box into the couch.
Chris: Yeah, that was very nice.
LizO: No, that wasn’t. It was just like it annoyed me, but I apologized later. I should just taken it off, but I don’t think of these things. We grew up just having a blast and jumping in mud puddles. What did you tell me earlier about the bathtub?
Chris: Oh, yeah. No, it was great. I think about growing up, right? And, this comes back to mom. Mom was very structured, very committed, high driving, tons of energy. Even today, the energy is off the charts compared to us. Education was really important to her, the whole aspect of giving back, realizing what you have, and just throwing that in there. Not to digress, but it just made me think, even at Christmas time, I remember as a little kid being in our station wagon, and mom would go buy a couple bikes or something and toys. And, we would drive through the old north end in Burlington, which was somewhat of a depressed area.
Chris: She would see a child or a family and stop, and we’d get out and give them these gifts. But, yeah, very, very structured, but also flexible. It made me think, she rarely got mad. I remember with our brother, Anthony, when you’re younger, you’re taking baths together, and him and I are just always creative. The bathtub is filled, and we’re pretending we’re on a ship, and we’re sliding down the bath, and water is overflowing out of the tub and going on the floor. Mom’s downstairs, and water’s coming through the ceiling and just, oh, okay, great. They’re having fun. Can you guys stop that?
LizO: They’re having a good time.
Chris: I grab blankets, and then I’d be sliding down the stairs and rip the carpet and whatever and smash into the wall. They’re just like, “Oh, the kids are having fun again.” So, that was pretty cool, right?
LizO: But, I think it was. It was, and we just had a lot of freedom. But, our personalities are very different and very alike. I think we’re very complementary. And, you make me laugh, too. You’re funny, so I like that.
Chris: Oh, well, same. Listen, I guess, folks, it’s a great relationship. Liz O, love you very much.
Liz Ouellette: Same back to you.
Chris: It’s cool, and it’s really cool to have the opportunity, these things, whether it’s the fundraiser, Yohan, the CMTA, has really, I think, also kept us connected.
LizO: Absolutely.
Chris: And, at times I wonder, I think, boy, if we didn’t have that, will we still be connected? And, there’s part of me that says, “I know we would. I know we would.”
LizO: We would.
Chris: Because, there’s that sense of family and appreciation for one another and Yohan and Gilles. You love our kids, et cetera, so that family aspect is big.
LizO: It’s huge.
Chris : And, I think you said it well. I’m proud of that. I do think we have a good example of how a family can come together and strive to overcome a number of hurdles, specifically as related to CMT, right? And, there’s a lot more power with more-
LizO: That’s right, it’s not just me and you. Our parents, our siblings, our community, our family, everybody is involved.
Chris: Yeah, it’s cool.
LizO: They don’t even hesitate.
Chris: That’s good. I hope mom’s listening, because we need her to make a big donation this year.
LizO: Yeah, I know. This is the reason we’re mentioning her. No, I’m just kidding.
Chris: Get out your checkbook, mumsy,
LizO: Mama.
Chris: So, Liz O, let’s talk a little bit about this podcast.
LizO: So this is an idea you had six years ago.
Chris: Years ago.
LizO: Yeah, and people were starting podcasts. We should do a podcast. At that time, I’m like, “How do you even do a podcast?”
Chris. I don’t know.
LizO: Now, everybody has a podcast, but you had this idea, and the board of directors actually supports us 100%, love the podcast. They love the podcast. And, thanks to Mark, it’s pretty easy. And, I love doing it with you. And, we have interviewed some people that are just amazing. Every single person, and so the CMT4Me podcast, and you came up with the name, which you’re very creative also.
Chris: And, CMT4Me. And, again, it’s another … And, keep in mind, don’t just push yourself aside on this one. This is collaborative. That’s what’s cool, and you’re just making me think, whether it’s back in Bahamas. I’m like, “I’d like to do a fundraiser,” but working with you continues that creative. And, where do we go? Because, you don’t want to do anything small, right?
LizO: No, I can’t.
Chris: You’re like, “Okay.”
LizO: It’s either 100% or zero.
Chris: Exactly.
LizO: That’s a problem, but that’s the way I am.
Chris: Exactly, so we work well together. That was really again thinking about, with my experience with CMT individuals is that, how do we give more individuals with CMT the platform and voice? As our intro says, it’s really their inspirational stories. How can we get more people with CMT connected to one another so they feel they have support? It goes to the same thing with the fundraiser. It’s a platform, and this podcast is a platform for individuals to express themselves, tell their stories.
Chris: It’s been cool, because there’s been some people that have listened to the podcast that then have reached out to another individual who we interviewed. Or, they’re new to CMT, and now they have resources. So, I feel really good about that. One thing I think we work hard on too, and someone made me think about this, was you don’t always want to just focus on the negative, right? Oh, here’s all the negative things going on. No, we’re realistic, and we talk about the facts, but there are so many great stories about overcoming challenges and sharing information. On top of that, the big goal is spread awareness, right?
LizO: That’s right.
Chris: And, we’ve got to spread awareness. That, I think, ties into how we can raise more money for research, if we have more and more people engaged.
LizO: So, I was just blown away yesterday, and I actually took a video of you soliciting merchandise or a gift certificate from a restaurant. You are such a natural. You just go in there, and I just watch you. Usually, this is our tactic. We walk in a store. I go shopping and buy something. Then, Chris starts talking to the owner about the cycle event, what CMT is, and tries to get a gift certificate while I’m checking out. Usually, the answer is yes, but you’re so talented at it. You just have no inhibition.
Chris and LizO at Cycle 4 CMT 2021
Chris: Wow, that’s cool. Thanks for that feedback. But, you participate as well, and it is a strategy. I’m like, “Liz O, you go buy something, because if you buy something, then how can they turn us down?” So, it’s great.
LizO: Then, if I don’t see anything, you’re like, “Well, I like this. I like that.
Chris: Right, so I usually walk away after her visit, multiple pairs of pants, shorts-
LizO: Shoes.
Chris Shirts, shoes, you name it. It’s awesome.
LizO: It works.
Chris But, it is, it’s fun, and it’s interesting. I always look at the faces of someone who we’re trying to solicit, and you go, “CMT,” and they’re like, “Okay.” And, then you keep going. This individual yesterday who finally came around, and you learn-
LizO I didn’t think he was going to.
Chris: I didn’t either, but then you learn-
LizO He was clearly like, “Whatever, whatever.”
Chris : You learn, things come up as you keep talking to people. What did he say? I said, “Do you bike?” And, he’s like, “Well, no, I have a motorcycle out there.” Then, that’s like, “Oh, well, I used to ride motorcycles. I had a Honda Shadow 500. Oh, that’s a great bike.”
LizO: So good at making those connections.
Chris: So, you make these connections. Then, you talk about, which I think is important, it’s that statistic of … I always forget. What is it, one in 2,500 or 2,800 have CMT? And, relate that back to say Burlington, Vermont or Vermont, population of 647,000, right? So, when you say, “Hey, we were born in Burlington. We’re native Vermonters, and by the way, you may not know it, but there’s over 200 people in our community that have this incurable disorder at this point.” They start to think, and I find a lot of times, after those discussions, it’s hard for them to say no. And, I don’t feel that they feel the obligation, but I think they understand. And, it’s that passion. And, Vermont is a really community-driven state that is always looking at ways to give back. That also makes it a little bit easier, but then people feel connected, right? You’ve got to bring them in terms of how they can help us towards our mission.
LizO: And, what’s really unique here is the community is important. The community feel, and community comes together when you’re in need. Vermont and the surrounding areas are just great for that. I just miss that. I miss it a lot.
Chris: Yeah. Yeah. Well, it’s good. It’s good. We’re on a good path, folks. Liz O, are we coming to the close of this podcast? I think we kind of covered our topic.
LizO: Yeah, we’re probably just talking. I don’t even know how long we’ve been talking.
Chris: People are probably like, “Oh, my God, will these guys shut up?”
LizO: Oh, my God, are they going to stop talking?
Chris: Right. But, folks, listen. For those of you listening to this podcast, this is our opportunity. We’re not going to do our standard close, but to really thank you. Thank you for listening. Back to Liz O’s comment about doing your part as well, if you can tell folks about this podcast, if you can direct them to the Cycle4CMT fundraiser or to the CMTAUSA.org website, we need all hands on deck here.
LizO: Back to the ship in the bathtub reference.
Chris: I know, I know.
LizO: All hands on deck.
Chris: And, Liz O, maybe some of our listeners can help us if we spread this right. What’s one of our goals that we’d love to do someday, is kind of-
LizO: Oh, my gosh, we would love to be-
Chris: When you think of the news, and what would we love to do? It’d be sweet.
LizO: I’m so sick of hearing negative things. It’s all negative. So, I see this-
Chris: The news? You mean in the news?
LizO: Yeah. Yeah, everything is just negative and worrying and worrisome. Let’s get a feel good story like us helping the CMT community to find a cure for this disease and talk about all the people that do such incredible things, despite the limitations that CMT imposes. Wouldn’t it be great, Good Morning America? Or, there’s so many, so, so many programs that we would love to be on.
Chris: Right, CBS News. Maybe we could be interviewed by someone who has a podcast now.
LizO: That’s right.
Chris: That has a greater reach.
LizO: Guys, we want to go national here. We want to go international, actually. We’d like to go international.
Chris: That’d be cool.
LizO: Get the word out about CMT. We work with people internationally, so let’s get this on. Let’s get going.
Chris: Yeah, let’s do it.
LizO: Do it.
Chris: Yeah. Liz O, have you heard of those Sprinter vans?
LizO: No.
Chris: No, okay. Well, they’re these cool vans you can put your bike in. People are buying these things now and throwing their skis in there and bikes and whatever. But, it made me think, wouldn’t it be kind of cool at some point where we could have as your background as the CMT4Me podcast logo on the side of this Sprinter van, and we tour the country and go to these areas and interview people with CMT. Wouldn’t that be sweet? That’d be fun.
LizO: Yeah, it would be fun, and we’d meet so many people. Now, that’s a story. Now, you’re cooking.
Chris: What’s it? Who’s the-
LizO: Alan Jackson?
Chris: No, no. Yeah, yeah, that’s Alan Jackson.
LizO: CMT came out, and I’m like, “Chris and Gilles, you guys have to bike there. You have to bike there, and we can make a story.” Chris was like, “I’m not biking there.”
Chris: No, it made me think of Al Roker, right? He goes on the road sometimes and travels in this van and does the weather in all these different areas of the country. We could do the podcasts in all these different areas of the country.
LizO: Yeah, let’s do it. You have to just stop working.
Chris: Yeah, okay, that sounds great. I hope people from-
LizO: Hey, talking about the podcast-
Chris: I hope people from where I work are not listening to this. No, just kidding.
LizO: So, about the podcast, if you want to leave a review, and we’d love to have your review, Apple Podcast has a place for that.
Chris: Awesome.
LizO: Yeah, so I just wanted to throw that out there, and it’s available on Spotify, Apple, all the major podcast outlets. You can hear this podcast, CMT4Me.
Chris: Awesome. All right, Liz O, time to go. That’s a wrap, sis.
LizO: All right, thanks, everyone for listening.
Chris: Yeah, thank you.
LizO: Cycle4CMT.com or CMTAUSA.org. If you have an interesting story, let us know, info@CMTAUSA.org, info@CMTAUSA.org. And, watch us on YouTube. We’re live.
Thank you all for your unwavering support of a cause so dear to my heart – CMT. Yohan was diagnosed 22 years ago with this progressive neuromuscular disease (the nerves deteriorate and in turn. the muscles atrophy). Where has the time gone?
As we turn the page, Yohan, at 29, is starting a new chapter in his life. Despite a year of setbacks due to COVID, he never gave up his quest to find a satisfying job and he succeeded!
Gilles introduced Yohan to cycling several years ago. Having never biked as a child, Yohan did not know what it was to ride around the neighborhood with his friends. Now, he is experiencing freedom on 2 wheels – an exhilarating activity. His e-bike has changed his world.
As Yohan moves forward with his life, his CMT moves right along with him, damaging his nerves and making his muscles weaker and weaker. As a parent, it is extremely hard to watch your own child lose the ability to walk, open cans, and lack the energy to fully participate in life. Yet, Yohan never complains. He embraces his reality with humor and acceptance. Yohan truly is an amazing human.
It takes 10 years and a billion dollars to bring a drug to market. 90% of drug candidates in clinical trials fail. These numbers may sound discouraging, but because the genetic cause of CMT has been identified, we have been able to make remarkable progress recently. When one of our sponsored projects shows promise, our pharma and biotech partners step in to provide the additional funds to take them to clinical trials.
This year, my family (Me, Uncle Chris, Yohan and Gilles) is once again organizing Cycle 4 CMT events around the country. The signature VT event is on August 28, 2022. The San Fran Bay Area ride is on September 17, as is the ride in Wisconsin. Many around the country are doing their “OWN” ride, cycling anywhere, anytime before September 30, 2022.
After 20 years dedicated to CMTA, my time at this wonderful organization is winding down, but I refuse to disappear into the night. I’ll never be too far, and my heart will always be with my friends and family who deal with this cruel disease every single day. Whatever the future holds, let’s make this 9th annual Cycle 4 CMT the most memorable in CMTA history!
Yohan and his friend, Vincent
Here is my ask: Please sponsor me on behalf of Yohan. My goal is the sky, but I’m really aiming for the stars. My dream? To raise as much money as possible to change Yohan’s life and the lives of many living with CMT. To date, there is no cure for CMT. I have a big problem with that. Let’s change the course of this disease, together. Please give generously: www.cmtausa.org/elizabethcycle Checks accepted! Send to CMTA, PO BOX 105, Glenolden, PA, 19036. Please write Cycle 4 CMT n the memo line.
If you’d like to join an organized ride or do your “OWN” ride/walk to raise funds for CMTA research, please visit – www.cycle4cmt.com. Everyone is welcome!
bestfoot4wardblog 