Advocacy & Fundraising
Empowering change through research, support, and relentless advocacy for FSHD families.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
This page contains all the ACF Modules so you can see them used, in action.
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Internal LinkSuspendisse id ligula eu libero varius efficitur. Mauris scelerisque diam ac massa vehicula, quis tincidunt sapien pharetra. Nulla facilisi. Aenean ultricies, eros ac venenatis posuere, odio odio feugiat sapien, nec interdum elit libero nec lectus. In hac habitasse platea dictumst. Donec tristique lectus ac justo fermentum, id pharetra arcu dictum. Etiam ullamcorper, lorem in pellentesque scelerisque, velit neque rhoncus justo, et molestie mi augue non metus. Fusce ac magna convallis, auctor urna eget, convallis felis.
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Take control of your FSHD journey and help develop potential treatments faster.
Empowering change through research, support, and relentless advocacy for FSHD families.
Providing patients with knowledge, support, community, and tools for their unique journey.Â
Advancing hope through groundbreaking FSHD research and innovative clinical trials worldwide.
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The FSHD Society’s vital work in supporting FSHD patients, families, researchers, and advocates is made possible through the generous contributions of corporate partners who are also dedicated to our mission.
If you would like to learn more about partnering with us, please contact us.
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CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD […]
It’s our annual Thanksgiving Special and this year we’re featuring musicians living with FSHD. Tune in for interviews, instrumentals, and more.
8:30PM ET | 7:30PM CT | 6:30PM MT | 5:30PM PT Saturday, April 13, 2024, 6:30pm MT at the Boise State University Special Events Center Raise money to fund research […]
2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who […]
Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks of the Mile-High City. […]
Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the […]
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a […]
Save the date! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD […]
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Ask the FSHD Navigators and get connected with a real person. We are here to journey alongside you and give you the resources you need to live your best life with FSHD!
Just email us at Navigator@FSHDsociety.org, call (781) 301-6060, or submit a question.
We want to help you connect with providers and resources who are informed about and experienced with FSHD.
Empowering change through research, support, and relentless advocacy for FSHD families.
Providing patients with knowledge, support, community, and tools for their unique journey.Â
Advancing hope through groundbreaking FSHD research and innovative clinical trials worldwide.
By Amy Bekier, San Diego, California Traveling is supposed to be magical. Think sunsets in Santorini, surprise upgrades, and tiny shampoos you definitely don’t need but absolutely take. But if […]
Connecting our community through the latest FSHD information on research, newsmakers, and breakthroughs.
Accelerating scientific discoveries and clinical advancements to develop treatments and a cure for FSHD.
Join us for engaging events that foster community, raise awareness, and support FSHD families and initiatives.
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By Amy Bekier, San Diego, California Traveling is supposed to be magical. Think sunsets in Santorini, surprise upgrades, and tiny shampoos you definitely don’t need but absolutely take. But if […]
A New Look. A Stronger Voice. The Same Mission. We’ve refreshed our brand to better reflect who we are, the impact we make together, and the future we’re building with […]
Originally posted to BusinessWire on April 23, 2025 – Advanced MRI analytics to enhance early signal detection and inform development of first-in-class epigenetic therapy SOUTH SAN FRANCISCO, Calif.–(BUSINESS WIRE)–Epicrispr Biotechnologies, […]
A transformative force for the FSHD Society by June Kinoshita, FSHD Society Judy Seslowe, whose life was marked by compassion, leadership, and unwavering commitment, passed away on April 13, 2025 […]
Taking back control of my destiny through research By Heloise Hoffmann, Standford University For the past year, I have been working alongside a team of fellow undergraduates at Stanford University […]
Epicrispr Biotechnologies, a South San Francisco-based biotech company, has announced two major advancements in its mission to develop transformative therapies for genetic diseases. The company secured $68 million in Series […]
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.
Accelerating research, providing support, envisioning a world without FSHD.
Our network supports the FSHD community with compassion and collaboration.
The Society has bold goals and we are making significant progress.
