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!
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!
Hi Elizabeth, Barry here. You were the first person I talked to at CMTA shortly after I was first told I may have CMT which we now know I do. You were so helpful and understanding. You put me in touch with Kenny Raymond which was a blessing and you helped me get going on my virtual ride last year. I had a blast and a purpose. I was not in a good place before discovering CMTA and you and everyone else at CMTA have been such a big help. This year we have formed a team in Two River/Manitowoc Wisconsin called “Manitowoc Walk ‘n Roll over CMT” we have a 10 mile course mapped out on the paved bike trail that runs along the Lake Michigan shore line. We are doing this Sept. 17th at 10am. If you are reading this and want to join or support our team you can go to our team page https://secure3.convio.net/cmta/site/TR/Cycle4CMT/CYCLE?team_id=1110&pg=team&fr_id=1091
or contact me Barry Hett at
Thank again Elizabeth and CMTA.
thxs Yohan for sharing your CMT journey with us. thxs to all of the contributors, for they help all the CMT’ers to reach to the STARS. I will be leaving my gmail to follow these tales in this format!! from a CMT1A -Susan