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.…
DetailsMe, 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,…
DetailsBy Katerina B. “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…
Details(Written for Katerina’s CMT Blog: Beauty in the Pain: https://kballsmith.wixsite.com/blog) Who is Katerina? 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…
DetailsEleven 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…
DetailsGet 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…
DetailsThank 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…
DetailsWe’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…
DetailsThe training wheels came off my own bike so long ago; I’d forgotten the emotions, challenges and vulnerable feelings of trying to balance on two wheels for a few pedal strokes without crashing to the ground. In fact, I had always taken riding a bike for granted until my 5 year-old son, Yohan, attempted to…
DetailsThis is a transcript of the CMTA’s recent STAR gene therapy webinar. CMTA Board Chairman Gilles Bouchard begins by giving an overview of CMTA’s research initiative – STAR (Strategy to Accelerate Research), followed by an in-depth review of our gene therapy program by Drs. John Svaren and Kleopas Kleopa, members of our Scientific Advisory Board.…
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