True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
This 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. […]
Read More
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 […]
Read More
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 […]
Read More
ARE 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 […]
Read More
“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 […]
Read More
On 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! […]
Read More
One 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 […]
Read More