Disability and financial expert, James Traylor, provided a very informative presentation on the basics of navigating disability benefits and services. Strategies on planning for home-care services, Social Security, Disability Benefits, wills, trusts and college were covered along with many other areas and attendee questions. HNF also announced its brand new State Resource Page with contact information for all state offices and programs.
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.