This year, we are proud to say that the FSH Society is celebrating its 25th anniversary. For a quarter century, we have had the honor and the privilege of helping individuals with facioscapulohumeral muscular dystrophy (FSHD) and their families educate the general public, fundraise for research to find a cure and foster community support.
Founded in 1991 by Steve Jacobsen and Daniel Perez, two individuals with FSHD, we have grown to be the world’s largest and most progressive grassroots network for those with FSHD and their loved ones.
Since our humble beginnings, we have been able to fund $6.85 million in research grants, which have been leveraged to over $94 million in funding from the National Institutes of Health. Our efforts have resulted in many accomplishments, including the discovery of the genetic causes of FSHD.
Looking back on the past 25 years, some of our favorite moments include:
- 1994, Daniel Perez gave his first testimony before the U.S. House of Representatives Appropriations Committee to advocate for federal attention and funding for FSHD.
- 2001, the FSH Society wrote the MD CARE Act to include all forms of muscular dystrophy, which was later enacted into law by President George W. Bush.
- 2010, research initiated by the FSH Society led to the discovery of a specific genetic “package,” called DUX4, associated with FSHD.
- 2015, a research team funded in part by the FSH Society was able to deactivate the DUX4 expression in human FSHD muscle cells using CRISPR/CAS9 technology.
And most recently, we achieved a four-star rating from Charity Navigator for the eighth-straight year.
None of these accomplishments, however, could have been possible without the support from our donors, volunteers and members of the community. Your dedication to this tight-knit community have supported us for a quarter century, and for that we say our sincerest “thank you.”
Looking ahead to the rest of 2016, we will be hosting a range of events to celebrate the milestone. On June 21, 2016 we will be teaming up with the international FSHD community to host the first-ever World FSHD Awareness Day. We will also be hosting an international research conference and gala for researchers and patients on November 10 through November 12, 2016 in Boston, Mass.
Finally, we also hope that 2016 will be a standout year for fundraising and funding research. We have set the bar high this year with a fundraising goal of over $2.3 million, and plan to fund nearly $1 million in new research grants.
To help us reach our fundraising goals, donate here.
Thank you for supporting the FSH Society throughout the past 25 years. We can’t wait to see what the next 25 years has in store for our community.