True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
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 […]
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Get to Know the Hosts of the Official CMTA Podcast – CMT 4 ME – with Chris and LizO This episode is dedicated to Riley Ashe Don’t want to read a transcript? Listen to the CMTA’s Official Podcast, CMT 4 ME, here: https://cmt4me.buzzsprout.com/1849476/10962021-get-to-know-the-hosts-of-cmt-4-me-chris-and-lizo Chris and LizO: CMT 4 ME Podcast Comin’ at you! What do […]
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We’re back! Yohan yelled, sliding the door to the garage open. I noticed he was walking funny, not CMT funny, but like he had a stiff leg, a heavy foot, an injured limb? My perplexed look begged the question… What now? He brushed off my concern, acting if I were being overly paranoid and concerned […]
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My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made […]
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OUR STORY – Yohan and I had so much fun trail riding when we were younger. Oh, the stories we could tell!! I’ll never forget the time I stepped in a bee’s nest and ran for my life with Yohan on my back! He held on to my mane and stayed on. Phew! Close call! […]
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ARE YOU READY? The Cycle (and Walk!) 4 CMT event at the Old Lantern in Charlotte, VT on Sunday, August 26 will be upon us before you know it! Please act now to reserve your spot to cycle, walk and/or attend the unforgettable after-party! Whether you are attending the event […]
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Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he […]
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“These shirts look fine. Why do I have to iron them?” Yohan asked with his serious face. As he held the shirts at arm’s length and brought them closer to his eyeballs, squinting to make out the “wrinkles”, I pointed the way to the iron and ironing board. Still not game, he shared an idea, […]
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“What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my […]
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What’s a Funcle? A Funcle is a Fun Uncle, of course! Yohan’s Funcle Chris (my brother) is a whirlwind of energy, laughter, determination, and gusto. Our families have remained close over the years, vacationing together, spending summers in Vermont, celebrating holidays together, etc. Here are just a few pictures to illustrate my point: […]
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