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2021 Annual Report

Home / 2021 Annual Report

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.
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Advancing Research

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

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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)

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Donation Address:

Department 960, P O Box 4106
Woburn, MA 01888    U.S.A.

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

(781) 301-6060

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