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,…
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…
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…
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…
DetailsOn Saturday, March 18, the CMTA put on a Patient/ Family Conference in collaboration with the University of Miami. We had a wonderful turnout, with people from all over the world in attendance. Gilles Bouchard, the CMTA’s Board Chair, explained progress to date on CMTA-funded research. I wanted to share my notes with You! …
DetailsOne day about 7-8 years ago, I get this random call from a young woman from Michigan. She wanted to volunteer with the CMTA. “Sure!”, I said enthusiastically. “We are always looking for volunteers-ALWAYS!” Now, compared to my loud, overly animated voice and my quick speaking conversational style, my new friend, Bethany, spoke slowly, methodically and…
DetailsYohan’s Foot Surgery #19 I hear voices. Eavesdropping, as if I were an innocent bystander, I witness the back and forth volley of words, arguments, and reasoning. Often, I put a harsh stop to the banter, for fear of losing too many precious minutes to internal disputes and emotionally draining debates. Trying to…
DetailsDedicated to all my friends who have a love/hate relationship with shoes. “I love those shoes….OMG – they are sooooo cute!” enthusiastically commented an unknown, young, attractive, athletically built woman. I looked around, certain that she was addressing someone behind me or outside my range of vision. Mouth hanging open, I stood stunned, realizing she…
DetailsThe pizza had just arrived. Before I could take my first bite, the subject of my husband’s company cocktail party surfaces. “Thanks, but no thanks. I don’t want to go,” I say with steadfast determination. “I’ve already made sure that chairs will be available,” he counters, attempting to make the event seem easy, cozy, attractive even.…
DetailsEver had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time…
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