Donor Impact
Your Support Drives Progress
Over the past five years, your generosity and commitment have empowered us to implement an aggressive plan to accelerate therapeutic development for FSHD. Recognizing the crucial role we could play, we have united pharmaceutical companies, researchers, government agencies, and other stakeholders worldwide with a common goal: delivering effective therapies to our families faster.
Guided by a proven strategy with ambitious timelines, we have consistently met or exceeded every goal set in 2018 and are poised to reach new milestones in 2024. The progress we’ve made together is nothing short of remarkable, and we are grateful for your unwavering support.
In 2023, we continued to build on this momentum with significant advancements in research, expanded support programs, and strengthened community engagement.
Advancing Research and Care
In 2023, we made significant strides in advancing research and care through new initiatives and strengthened collaborations:
- We expanded the Clinical Trial Research Network, now comprising 18 U.S. and 7 EU collaborating sites, as well as sites in Canada, Brazil, and Australia.
- The FSHD Navigator program was launched to provide individual patients with guidance and resources.
- We introduced Project Mercury, a patient-led global initiative to ensure timely access to FSHD treatments.
- The 30th 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.
- Our ongoing projects include updating international care guidelines, burden of disease studies, and BetterLife FSHD, a platform where patients can track their health data and contribute to vital research.
Expanding & Deepening Community
In 2023, we provided 200+ opportunities to engage with the community and build meaningful connections through a variety of channels:
- Gathering Place virtual affinity groups, meeting monthly, now including a Young Adults group.
- Twice monthly podcast episodes highlighted the perspectives of people living with FSHD and brought the latest FSHD news to the community.
- Local Chapter meetings (including in-person, virtual, and hybrid gatherings) connected people in their home region.
- Monthly educational webinars through FSHD University.
- Quarterly regional FSHD 360 conferences.
- We continued to grow our volunteer-led chapter program, which now consists of 37 chapters in the U.S. and Canada.
22% of mission funding was raised through volunteer-led events and local efforts