A recent article in More magazine featured the story of Hereditary Neuropathy Foundation president Allison Moore and her experiences living with Charcot-Marie-Tooth. From training for the New York marathon, to being diagnosed with cancer, through chemotherapy that brought out severe symptoms of CMT, the story is one that will resonate with those who live with CMT and their friends and families. It’s a daily struggle, and yet it can serve as intense motivation as well. Allison has dedicated her life to building HNF into a support network for those like her, and this dedication has inspired many to join the cause.
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.