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.
![Graph 2022 Financial Graph](https://www.fshdsociety.org/wp-content/uploads/2023/02/Graph.png)
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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.
![Researcher in lab Researcher portal](https://www.fshdsociety.org/wp-content/uploads/2021/01/Researcher-in-lab-scaled.jpg)
![2022 IRC Day 1 Group Shot World FSHD Day 2022 IRC Day 1 Group Shot World FSHD Day](https://www.fshdsociety.org/wp-content/uploads/2022/09/2022-IRC-Day-1-Group-Shot-World-FSHD-Day-e1663607754662.jpg)
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 University
- 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