Ann Taylor Jones – Covid Nurse Working on the Front Lines
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.
New Board Member, Lisa McCarthy
Introducing new board member Lisa McCarthy
HNF’S Board is Growing!
HNF is excited to announce the addition of four new board members to our team!
Meet Dr. Raghav Govindarajan MU Health Care
We caught up with Dr. Govindarajan, board certified neuromuscular physician at University of Missouri, to discuss his multifaceted approach to treating CMT.
The Long Road to Diagnosis Renews Dedication to Advocacy
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.
Embrace the Brace: A Mother’s Perspective on Helios
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
From the words of a CMT Hero
“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
One Woman’s Success with Surgery
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
NYC bike ride to highlight rare neurological disorder
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.