Donor Impact Report
We fund research... and so much more
It has been a year of expanded investment and accelerated advancement toward our goal of treatments and a cure for FSH muscular dystrophy.
- Nearly 3,700 new individuals joined us in our journey. Having built the largest FSHD patient registry in the world (4,400+), we are positioning ourselves to find volunteers quickly and efficiently for trials and studies. And with 3–4 clinical trials launching this year, our ability to recruit quickly is mission-critical.
- We funded over $2 million in grants as well as $1 million-plus in our own therapeutic accelerator projects. We have catalyzed the MOVE+ imaging study through our investment in expanding the Clinical Trial Research Network (CTRN) and initiated a next-level blood biomarker project—both of which are essential for successful clinical trials and regulatory acceptance of effective therapies.
- We have invested more than double any other year in our history–because that’s what is required to achieve our collective goal, approving over $3 million in research as well as accelerating projects focused on eliminating obstacles currently hampering therapeutic development.
Research Funding: Over $3 million in funding to support research proposals and therapeutic accelerator initiatives
Clinical Trial Research Network (CTRN): Expanded to 18 sites globally, initiated M.O.V.E.+ study to expand the M.O.V.E. FSHD Study
International Research Congress: 360 virtual participants, 25% increase in attendance
Circulating Biomarkers: Utilizing cutting-edge mass spectrometry approach
Genetic Testing Initiative: Improving access to genetic testing to better prepare the FSHD community for clinical trials
Continuing Medical Education (CME): Enhancing medical care to better help the FSHD community prepare for clinical trial eligibility
Expanding & Deepening Community
Empowerment: 58 support gatherings, podcasts, and educational webinars, connecting families, increasing personal knowledge, and improving interpersonal connections
Number of Chapters & Meetings: 33 chapters across the US and Canada, hosting 64 local meetings
Volunteer-led Fundraising Events: 35 fundraising events, including our signature campaign, the Walk & Roll to Cure FSHD, raising a record $930,130
Newly Identified Members: 3,692 new members welcomed into our FSHD community, a 19% increase
Newly Engaged Members: 1,807 actively engaged; a 24% increase; with 4,390 patients enrolled in the FSHD Society registry (inclusive of 500 newly identified patients - double the previous year)