My Nonprofit Reviews

I learned my husband and son had FSH muscular dystrophy late in 2017. Our family had never heard of this type of MD. We were familiar only with the Jerry Lewis telethons of our childhood. I contacted the FSH Society (going forward the FSHD Society) and was profoundly impressed with its expediency in responding to my call for help. Everyone associated with the Society is caring, professional, and goes the extra mile for patients and their families.
Over the past two years we have been extremely involved in advocating and building awareness of FSHD and with the Society’s help have started a Chapter here in Columbus Ohio and are making preparations to hold our 2nd annual Walk & Roll to Cure FSHD.
The FSH Society (FSHD Society) publishes an extremely educational and reader-friendly newsletter called The Advocate and offers countless ways to learn about the disease, become connected with others who are dealing with the disease either through diagnoses or support roles, and get involved in advocacy through its Chapter program and fundraising opportunities.
Its President, Mark Stone, is leading the charge to fund the most promising research from around the globe. Funds received are spent efficiently and transparency in where the dollars are allocated can easily be located on its website.
The gene causing this disease was identified in 2010 and we are impressed with the urgency and collaboration by those working on treatments and a cure as opposed to competition and secrecy. I owe that collaborative culture to Mark Stone and all who work on behalf of this disease.