Together we are stronger than FSHD
The FSHD Society’s mission is to advocate for every patient to live fully while doing all we can to accelerate the development of treatments and a cure. To succeed, we must connect with a wide community of people everywhere, because FSHD knows no borders and there is great strength in our differences. Families around the world are affected. And research and clinical trials for new treatments must be international in scope because in a rare disease, no single institution or country will be able to recruit the needed volunteers.
Some may think our global vision is impossible, but we beg to differ. We believe success is possible because we believe in you. We are able to pursue these aims because people like you take the time to read and think, is there anything I can do to help?
Let us count just a few of the ways you have helped
More than 300 households in the U.S. completed our TrueCost of FSHD survey, with its 125 questions asking for an enormous amount of detail about family members, household income, education, employment history, insurance coverage, and a myriad of expenses related to living with FSHD. This is the largest-ever socioeconomic study of the impact of FSHD. We will be analyzing this incredibly complex and rich data over the coming months, extracting insights that we will publish in journals that will be read by medical professionals, pharmaceutical companies, insurance companies, government agencies, policy analysts, and others. The data you shared will inform decisions about fair pricing and patients’ access to future therapies.
Amazing individuals have stepped forward to lead the 30-plus chapters in the U.S. and Canada and two dozen national groups that have formed the World FSHD Alliance. They offer help and support locally to individuals while working to have global impact. Too many individuals around the world are carrying the heavy burden of having FSHD—a burden that can be lightened, even if it cannot be eliminated. It can be lightened by making sure people know they are not alone. By educating health care workers to recognize symptoms. By spreading knowledge about the benefits of exercise and methods to manage pain. By fighting ableism. By volunteering to lead a support group. By volunteering for a research study.
Hundreds of you convene every month on Zoom in our Gathering Places—the Wellness Hour, Women on Wellness, Care Partner Hour, Early-Onset Parents Roundtable, and Feeling Fit with FSHD—to share the knowledge and wisdom you have accumulated. You have so much to teach each other. Your unique perspective and knowledge strengthens all of us. We are here to listen, learn, and amplify your voice.
We believe in you. That’s why we will succeed. And failure is not an option.
Give Back on #GivingTuesday
Tomorrow, November 29, 2022, two dozen community champions will participate in our annual #GivingTuesday Radiothon. These remarkable people will talk about their passionate commitment to the FSHD community. Donations to our #GivingTuesday campaign will be matched up to $150,000 by a generous benefactor!