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2022 Annual Report

Home / 2022 Annual Report

Donor Impact

Your support has propelled us forward.

Four years ago, fueled by your generosity and commitment, we launched a bold plan to accelerate therapeutic development for FSHD while empowering a growing, active community. We laid out a roadmap with lofty goals and aggressive milestones.

Together we have reached every mile marker ahead of schedule.

2022 Financial Graph
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Advancing Research

Our ability to advance research grew, through continued investment in specific research projects, advancing Therapeutic Accelerator initiatives, and by bringing together an ever-growing network of  stakeholders to collaborate, problem solve, and chart the best course forward.  

  • Direct research funding was utilized to validate blood biomarkers and use AI to identify risk factors for symptom progression. 
  • The TestFSHD initiative advanced trial-readiness for our community by providing free genetic testing for 150 patients. 
  • The True Cost of FSHD study gathered information from over 300 households about FSHD-related expenses, so that we can better advocate for insurance coverage of future treatments. 
  • Data is currently being analyzed; results are expected to be published in 2023. 
  • The 29th annual International Research Congress on FSHD brought together researchers and clinicians from all over the world for collaboration and inspiration. 
  • The Industry Collaborative Workshop congregated key stakeholders to review progress in therapy development and agree on the best course forward. 
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2022 IRC Day 1 Group Shot World FSHD Day
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Expanding & Deepening Community

194+ opportunities to engage with your community and build meaningful connections through a variety of channels, including: 

  • Gathering Place virtual affinity groups, meeting monthly 
  • Twice monthly FSHD Radio podcasts 
  • Local Chapter meetings (including in-person, virtual, and hybrid gatherings), connecting people in their home region 
  • Monthly educational webinars through FSHD U 
  • The bi-annual FSHD Patient Connect Conference and quarterly regional FSHD 360 conferences 

25% of mission funding was raised through volunteer-led events and local efforts

Our worldwide community grew by 15%, including nearly 600 patients, who’ve self-identified as being ready & willing to participate in research

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General Mailing Address:

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

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

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