Therm-a-Rest Founder Offers Unforgettable Gifts to CMT Community

James Lea

It was in the winter of 2012 that we met the elderly man sitting in a bulky hospital-style wheelchair, covered from shoulder to toe with a plush blanket. Jeana Sweeney and I had flown to Seattle, WA to speak at a local CMTA branch meeting. We had just begun the presentation when a bright and lively young woman entered, pushing an old man to the front of a fully-packed room.

He put “Jim” on his nametag. Jim listened intently to our talk, not missing a beat. He even asked a few questions with his quivering, shallow voice, which betrayed an inability to completely catch his breath while speaking. He must have been around 90 years old, 100 even! And, he was obviously affected by decades of living in a body with CMT, but he forged onward.

At the end of the meeting, once  Jeana had finished her pep talk about CMT awareness and fundraising, a few people hung out to ask questions, socialize and munch on home-baked sweets!  While I was speaking to the branch leader, stuffing brownies into my mouth, I spied Jeana who was making a most definite beeline for Jim and his caretaker. Hmmmmmmmmmm…

45 minutes had passed and I was more than ready to hit the road and make our way back to the airport. Most people had left, but Jeana was still chatting away with Jim and his caretaker. As I was packing up my stuff, I overheard Jeana ask, “Have you ever thought about getting involved or giving to the CMTA?”

“OMG, really?” I thought as I struggled with the zipper on the projector pouch. “Really? Tell me she didn’t. Did she just ask that elderly man we do not even know for money? Seriously, we have to have some boundaries here. She’s great at fundraising and all, but taking advantage of the elderly is not right!” I made a mental note to talk to her as soon as we were out of earshot.

On the way back to the airport, I expressed my concern. Jeana just started laughing. “You only heard like one tiny part of our conversation, Elizabeth. And I was not taking advantage of anyone! I can’t believe you would even think that of me!” she added with a serious scowl.

Long story short, Jim or James Lea is known for his invention of the Therm-a-Rest mattress. If you do any outdoor activity or camping, you’ve probably heard of Therm-a-Rest! Throughout the conversation, he willingly mentioned his philanthropic activities and admitted that he wanted to help people with CMT. Having been diagnosed with CMT early on in his life, he wanted to give back to a cause close to his heart. But first, he had to do some homework.


He asked Jeana if she would be willing to go back to Seattle and spend a couple of days with him to talk about the CMTA, its mission, and financials. More than anything, he wanted to get to know Jeana better, to understand her values, her work, and her purpose.

Jeana ended up spending 3 full days with James, from 9am-7pm  with James, who was still very busy with his various business ventures. Later, I called James and interviewed him. Here is the article I wrote for the CMTA Report:

James Lea is one of the original founders of Cascade Designs and the developer of Therm-a-Rest, the world’s first self-inflating camping mattress. Born in Tacoma, Washington, on October 22, 1920, this spritely nonagenarian shows few signs of slowing down any time soon. When asked what he does in his free time, Jim was quick to respond, “What free time? I am very busy!” When he is not working in his office, he tries to remain as active as possible. He enjoys being on the lake and working on boats, always trying to improve their function. Jim also put a lot of emphasis on taking care of himself by eating right and maintaining good lifestyle habits. Once in a while, he might even play his ukulele, which is increasingly difficult due to his CMT. Yes, Jim Lea has CMT, as did his siblings, father, and grandfather, who got around using two canes.

Jim was in his thirties when he first noticed signs of the disorder, “When I walked, it felt as though my socks were bunching up under my feet.” It was not until he was in his late 50s that neurologists from the University of Washington officially diagnosed him with Charcot-Marie-Tooth. As a successful engineer and businessman, Jim has managed his CMT over the years. “Truthfully, I just try to ignore it, work around my difficulties, go ahead with my day and do the best that I can, every day.”


Jim Lea “poses” for a picture. Later he admitted, “This picture was a hoax! I never rock climber in my life. Look at the shoes I am wearing!”






Forever inquisitive, Jim has also done quite a bit of research on CMT to better understand treatments, therapies, and current CMT research. Choosing to accept his CMT as an undeniable presence in his life, Jim never shied away from telling others about the heritable disorder passed on from generation to generation in his family. In fact, just last year at his 90th birthday party, he took it upon himself to spread awareness of CMT by passing out brochures and educating his guests about the disorder. How I admire James Lea and his positive, upbeat attitude! Despite the fact that CMT is affecting his breathing, his hands, his feet, and body, never once did I hear him complain or lament about his struggles. Moreover, encouraged by recent progress in the CMTA’s STAR initiative, he does hope that treatments are forthcoming for our younger generations.

His message to younger people with the disorder is to “stay strong, accept the condition, and find alternative ways to achieve your goals and dreams.” Not missing a beat, Jim also hopes that scientists will hurry up and find a way to create … another Jim Lea, at 65, who could do some of the many things he still wants to do in this lifetime! At 91 years old, Jim Lea is one of the most positive and upbeat souls I have ever had the opportunity to meet. His never-give-up attitude, inquisitive mind, and perseverance are most admirable, making him the legend and role-model he is today.

Jeana passed all his tests with flying colors, as did the CMTA.  Jeana and Jim created a true friendship which grew and blossomed right up until the day he passed on December 20, 2016. When talking on the phone was no longer possible due to hearing loss, Jeana sent him cards and letters, always making sure to include one of her daughter Rylee’s drawings.

Jeana Sweeney and her beloved Rylee.

James Lea gave a large part of his estate to the CMTA after his passing as he not only believed in the work of the CMTA but also in one of the Association’s most well-known, hardworking and genuinely caring CMT advocates – Jeana Sweeney. Jim will remain in our hearts forever, and his investments into the CMTA will help many for a very, very long time.


12 Compelling Reasons I’m Talking About CMT This September

Top Twelve Reasons I’m Talking About CMT during Awareness Month


12) Confused Faces-When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this:

Let’s stop the nonsense. I’m looking for reactions of recognition, like Dr. House’s below:

11) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is absolutely nothing wrong with my choppers. Yohan has beautiful teeth and healthy gums, too.  Dr. Howard Henry Tooth discovered this progressive neuromuscular disease at just about the same time as the French neurologists,  Dr.  Charcot, and his disciple,  Pierre Marie. So now we are stuck with Charcot-Marie-Tooth or CMT.

10. Eponyms. Jean-Marie Charcot is known as the father of modern neurology. And, he made sure no one would ever forget his legacy. Why? He was generous enough to share his last name with a host of other diseases he unraveled:

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Here is the short list of the master’s eponyms:


Sounds a bit narcissistic, don’t you think?

9) But, It Could Be SO Much Worse! 

I stop my complaining when I remember that the name COULD have been definitely much worse.  Why? One of my good doctor friends, a most reliable source, explained that Dr. Nikolaus Friedreich, as in the neuromuscular disease Friedrich’s Ataxia,  also wanted credit for the discovery of CMT, but the message of his discovery did not reach the authorities in time….something to do with an unannounced closing of government offices. So the Grand Poo-Bahs did not receive the important Carrion Pigeon or telegraph messages. Bummer for Nikolaus and hurrah for people with CMT everywhere! We don’t have Charcot-Marie-Tooth Freiderich disease (CMTF), but rather just CMT.

Thank God for small miracles.

8. Let everyone know that CMT does not stand for:

Country Music Television

Childen’s Musical Theater

Certified Massage Therapist

7.  Pronunciation: Give others ways to remember the name, pronounce like:




6. . Shark’s Teeth Convention? Once, I wanted to book a large room for a CMTA conference. The short discussion went something like this: “Hi. I need to book a meeting room for the Charcot-Marie-Tooth Association.”. “Okay, let me see. What is the date of your Shark Tooth meeting?

Carcharias_taurus_teeth (1)

Enough said. Ugh.

5. Rent a Costume or Let Your Pets Do The Dirty Work!

If you feel awkward about starting the CMT discussion, you and your animals can dress up like a shark – it’s fun and you are bound to get s few questions! Or, just paint your horse with non-toxic paint. People will ask… me.


4. Braces – Tell people you wear braces and when they look at your mouth, lift up your pant leg and flash them with your one-of-a-kind ankle-foot orthoses (AFOs).









3. Genius!

Wow your friends with your knowledge of medical jargon. Use CMT-related words like:

peripheral neuropathy, autosomal dominant, hereditary motor and sensory neuropathy, dorsiflexion, plantar flexion, pes cavus, myelin, axons, exome sequencing, orthosis, etc……

They’ll be stunned by your brilliance.

2. Participate! The CMTA makes it fun to celebrate and talk about CMT during CMT awareness month.  We have an entire interactive site dedicated to CMT awareness:

Or just send around the How Much Do You Know About CMT Quiz? 

Click here to take the quiz:

Be the expert on questions they can’t answer. Teach a friend and make good use of your never-ending CMT knowledge!


1) Acceptance-Whatever you do, talk about your CMT. Share your experiences with people who might not know about CMT. Most people want to know and CMT Awareness Month provides a platform to share resources and stories in an effort to shed light on this progressive neuromuscular disease, its symptoms, its effects.   Knowledge is power. Go forth and tell someone!


It’s CMT Awareness Month! How Much Do You Know About CMT?

CMT Awareness Month Quiz – How Many Will You Get Right?

Last year, I worked on a version of this quiz for CMT Awareness month. I decided to revamp the quiz by adding a few more questions, rephrasing some of the questions and adding detailed answers. I hope you enjoy the quiz and share with others to spread awareness of CMT.

1) If you suspect you have Charcot-Marie-Tooth (CMT) disease, who would you go see?

a) A shark expert

b) A dentist

c) A psychiatrist

d) A neurologist


2) What year was CMT discovered?
a) 1836

b) 1886

c) 1942

d) 2010

3) How many people are estimated to have CMT worldwide?

a) 45 million

b) 2.8 billion

c) 150,000

d) 2.8 million

4) CMT is a:

a) blood disease

b) neurological disease

c) infectious disease

d) autoimmune disease

5) What causes CMT?

a) virus

b) the cause is unknown

c) gene mutations

d) parasites

6) Can someone have CMT if neither of their parents has it?

a) Yes

b) No

7) CMT:

a) progresses over time

b) can, in some cases, cause respiratory dysfunction

c) May cause curvature of the spine, or scoliosis

d) Is currently incurable

e) All of the above

f) None of the above

8) CMT affects:

a) the peripheral nerves (nerves outside the brain and spinal cord)

b) the brain & spinal cord

c) the teeth and gums

d) the voice of most Country Music singers

9) Nerve damage caused by CMT can lead to:

a) muscle wasting

b) loss of sensation

c) pain

d) difficulty with balance

e) all of the above

10) Common symptoms of CMT include:

a) drop foot, clumsiness, tripping

b) fatigue

c) difficulty holding grasping objects

d) high-arched feet, hammer toes

e) all of the above

11) This is what a typical CMT foot looks like:




12) CMT can affect the thenar muscles. Where are the thenar muscles found? 

a) foot

b) hand

c) shoulder

d) thigh

13) Many people with CMT wear braces to:

a) straighten their teeth

b) protect their backs

d) correct foot deformities and foot drop

e) Show off their cool western style

14) The Charcot-Marie-Tooth Association’s overall mission is to what?

a) Feed the hungry

b) Broker world peace

c) Find treatments for CMT

d) Whiten the teeth of the masses

15) This symbol stands for what? 


a) Hope

b) Future

C) Treatment

D) All of the above





1). –  Please see a neurologist. The CMTA has Centers of Excellence around the country who have multi-disciplinary teams specializing in CMT:

2) b – In 1886,  Drs. Jean-Martin Charcot, Pierre Marie, and Henry Howard Tooth discovered CMT!

3)  – It is estimated that more than 2.8 million people have CMT, worldwide.

4)– CMT is a disease affecting the nerves which control the muscles ( unlike the muscular dystrophies which directly affect the muscles themselves).

5) c –  CMT is all about genes!

6) a –  CMT can develop as a result of a new mutation or spontaneous mutation. These cases are called “de novo.” A person who has a new mutation case can then pass the condition on to his/her children.

7) – e –  All the statements are true.

8) a – CMT is a group of inherited disorders affecting the peripheral nervous system, a network of motor and sensory nerves connecting the brain and spinal cord (the central nervous system) to the entire human body.









9) e – All the above. Yes, really!

10) e – CMT affects the longer nerves first; therefore, symptoms tend to start in the feet and hands and work their way up the legs and into the forearms, respectively.
Symptoms include, but are not limited to:

• Weakness in the feet, ankles and potentially legs
• Difficulty lifting the foot at the ankle during walking (foot drop)
• Depressed tendon reflexes
• Absence of development or loss of muscle bulk in feet and possibly legs
• Awkward or higher than normal step
• High foot arches (pes cavus)
• Curled toes
• Calluses and blisters on the feet
• Frequent tripping or falling
• Decreased ability to run
• Decreased sensation or a loss of feeling in feet and potentially up the legs
• Discomfort/pain in the feet
• Frequent twisting of the ankles
• Muscle cramping, especially in feet and lower legs
• Weakness in fingers and hands
• Decreased fine motor control
• Difficulty with fine motor tasks, such as using buttons and zippers
• Difficulty opening jars
• Decreased grip endurance
• Absence of development or loss of muscle bulk in hands and forearms
• Curling fingers
• Decreased sensation or loss of feeling in hands and potentially up the arms
• Tremor
• Overall fatigue
• Joint and/or nerve pain
• Hearing loss
• Breathing difficulties
• Sleep apnea
• Scoliosis (curved spine)
• Kyphosis (round back)

11)  True. CMT feet have very high arches and hammer toes, though some people with CMT can also have flat feet.

12 e –  The Hand!






13. d – Leg braces or AFOs (Ankle-Foot Orthoses) help with muscle weakness, muscle atrophy, foot drop and







14)  The CMTA’s mission is to….. support the development of new
drugs to treat CMT, to improve the quality of life for
people with CMT, and, ultimately, to find a cure.

Our vision … a world without CMT.

15) – d  – All the Above!

STAR  oe Strategy to Accelerate Research is the CMTA’s research initiative created with one goal in mind – to find treatments to slow, stop or reverse the progression of CMT.  Learn more  here:


Let me know how many questions you got right! Got questions? Leave them in your comments!


SHARE with others. Teach family, friends, and colleagues about CMT during CMT Awareness Month!