Ann Taylor Jones, a CMT1A patient, was told her whole life that she could never be a nurse. Now she works as a full-time ICU nurse treating COVID-19 patients.
Introducing new board member Lisa McCarthy
HNF is excited to announce the addition of four new board members to our team!
We caught up with Dr. Govindarajan, board certified neuromuscular physician at University of Missouri, to discuss his multifaceted approach to treating CMT.
Growing up we called it “Steffi disorder.” My friends and family were as baffled as my expert neurologists. I had been diagnosed with typical Spiral Muscular Atrophy (SMA) as a toddler but never followed its progression; I never seemed to get weaker. My myriad of symptoms was distinctly different than anyone else’s I had ever met in a lifetime living in the neuromuscular community. I thought I might never find my true diagnosis, let alone others who share it with me.
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
Five-year-old Aiden Kelly was diagnosed with Charcot-Marie-Tooth Disease (CMT) last April, but for the Wellesley boy, the impact of this rare disease has only revealed itself gradually.