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,…
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…
DetailsARE 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…
Details“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…
Details“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.” With raspy, uneven breath,…
Details“His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my…
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…
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