Making a difference

“The FSH Society has made a light-years difference in the field—attracting and pushing investigators, facilitating wherever possible, and managing the big picture along with the small details.”
John Porter, Chief Science Officer of Myotonic Dystrophy Foundation, former program director at the National Institute of Neurological Disease and Stroke


“Only 2% of the charities we rate have received at least 8 consecutive 4-star evaluations, indicating that the FSH Society outperforms most other charities in America. This “Exceptional” designation from Charity Navigator differentiates FSH Society from its peers and demonstrates to the public it is worthy of their trust.”
Michael Thatcher, President & CEO of Charity Navigator

Why I give

“I specifically chose to support the FSH Society over similar organizations for several reasons. It was founded in 1991 by a mother and son, both severely affected with FSHD, who understood the wide-ranging implications of FSHD. Year after year the FSH Society has run an efficient organization receiving 4 Stars from Charity Navigator. I like the FSH Society Scientific Advisory Board’s approach to awarding grants to scientists worldwide and fostering collaboration. In addition, they have been wonderful patient advocates and offer conferences, support systems, and resources introducing scientists to patients and their families. Although this is a dreadful disease that slowly robs its patients of the ability to perform everyday tasks, the one shining light is the many friends I have made all over the world because of the FSH Society’s conferences and social network of chatrooms, Facebook, private groups, and direct personal connections.”
Amy Bekier

Finding support

“My journey with the FSH Society started about 27 years ago. I was a young man about to get married, and I was scared. I was told some years earlier that I had this horrible disease that would eat up my body, and I would probably die in my sleep. Oh, I was shown pictures. And was told to live my life while I can, that there was no cure, and that I had something they had never seen before. There was no Internet back then; cell phones, if you had one, came in a bag and were too expensive to be owned by a normal person. Doing research on what I had, I came across a woman named Carol Perez, who one early evening answered her home phone. Before that evening I had never spoken to anyone else about what I had. That evening was not the last; to my friend Carol—my confidante, Mo Anam Cara ‘My Soul Mate’—we talked about love, life, children, and sometimes FSH. If it wasn’t for Carol, and if it wasn’t for the FSH Society, I truly believe I would not be the person I am today: I’ve had a full career; I have a loving wife, a beautiful son, and a certain type of light that shines out from me, given to me by a beautiful woman who had a spark in her eyes and fire in her soul. As I said to her son many times, I remember when her typed letters were mimeographed and sent in the regular mail. Now, with the Internet and Facebook, the FSH Society is with us at all times.”
Shawn J. Welch 

“I would like to say thank you to the FSH Society and members. I always read the new information that is posted, and it gives me great comfort. I started showing the signs of FSH when I was 11 years old. By the time I was 14, I had to give up all sports and was told that I would be in a wheelchair by the time I was 18. I am 27 now, and I am still walking and working. I have been told a lot that I can’t do things, which makes me even more determined to prove them wrong. My journey hasn’t been easy, but I’m getting to the place where I have to do the best with what I have. It is wonderful to know that there are people out there who give so much to help people with FSH, and again, I would like to say thanks.”
—Zoe Darmody

The FSHD community

“You’re all doing a great job! We’ve appreciated the help we’ve received from the Society since we first heard of FSH almost three years ago when my son was first diagnosed. Thank you so much! The only thing I’d like to know right now is where the next conference will be next year if you know. I just like to plan ahead.”
—Barbara Rosh Poling

“I was diagnosed two years before the Society was founded. At Carol Perez’s urging, Dad and I went to the conference in Massachusetts. I had never met anyone with FSHD before and was terrified. There was very little literature, and none of it was good. But I met a warm, vibrant community who were determined to get beyond this and fund research for our futures.”
—Deborah Schwartz

“The FSH Society is, for me and my girl (we both have FSHD dystrophy), the most important contact with the latest news … in Romania there are so few cases. I didn’t find until now a similar case.”
—Emilia Mitrea

“The FSH Society is such a great support, and to know there is work being done and directed right at FSH means so much. If I didn’t believe in the FSH Society, I would not hold a fundraiser that has grown each year. Thank you!”
—Rod Fulmer

A great resource

“The FSH Society has been such an awesome resource for me. I read and reread much of the information on your website. I have given my doctors copies of the Physical Therapy brochure. I appreciate having access to the most current information that you provide. The newsletters are also very important to me, and I read them faithfully. I would like to see more informational brochures for all doctors including orthopedic surgeons, etc. I would most importantly like to see more chapters throughout the United States. Maybe start with the major cities? Also, maybe a list of FSH-familiar doctors in our area. Thanks for asking us to share our stories and these ideas.”
—Tena Davidson

“I’m grateful for the quality of information available, and the FSH Society online message board has been a good place to connect with others with FSHD. In terms of future directions, I’m always keen to see people with FSHD able to interact and communicate with each other online, so encouraging and fostering more ways for that to happen would be great.”
—Carrie Coghlan