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New Board Member, Lisa McCarthy

New Board Member, Lisa McCarthy

Through their decades-long friendship, Lisa was inspired by HNF’s Founder/CEO Allison’s resilience and drive to help the CMT community live full lives and find a cure. After leading a Fast Forward session at the 2018 HNF Summit,  Lisa felt compelled to get more...
The Long Road to Diagnosis Renews Dedication to Advocacy

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.

From the words of a CMT Hero

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