Participa

The FSHD Society relies on the energy and passion of our community to accelerate research, advocate for change, and provide vital support. There are many ways to get involved and make a real difference in the lives of individuals affected by FSHD.

Connect with Community

You are not alone on your FSHD journey. The Society offers diverse opportunities to connect with others who understand. Find support, share experiences, learn, and build lasting relationships through our local chapters, online communities, and specialized groups. Together we are stronger.

  • Capítulos locales

    The FSHD Society has chapters across North America, offering local in-person and virtual connections for support, resources, and community.

  • Comunidades en línea

    Join our online affinity groups and social media accounts to connect with FSHD community members around the world and learn.

  • Early Onset FSHD Chapter

    Here you’ll find a dedicated community for individuals and families affected by the challenges of early onset FSHD.

  • Alianza Mundial FSHD

    Discover our global network of FSHD organizations working together to do more in education, support, and advocacy.

Eventos

Join us for events that support FSHD research, raise awareness, and build community. Our events offer opportunities to connect, learn, and make a difference. From our signature Walk & Roll to Cure FSHD to 360 Conferences and World FSHD Day, there is something for everyone. Find an event that connects with you!

360 Regional Conference

We hold multiple 360 conferences across the US where you can learn about the latest research, condition management, and more.

Sign Up

See Events Calendar

Cómo ayudar

Your support, big or small, fuels our mission. Explore the many ways to give, from making a direct donation to starting your own fundraising campaign or volunteering your time. Every action brings us closer to treatments and a cure.

  • Formas de donar

    The generous support of time, talent, and treasure from patients, families, friends, donors, and sponsors make progress possible.

  • Fundraise

    Volunteers nationwide raise funds their own way—from parties to golf days—to help cure FSHD. Join them and make a difference.

  • Donar

    Your gift fuels research, empowers families, and expands care—every donation drives progress toward a cure for FSHD.

  • Be a Volunteer

    Volunteers are the backbone of the FSHD Society’s work. Share your time and skills to help us make a difference for the FSHD community.

Defensa

Your voice can shape the future for the FSHD community. Join our advocacy efforts to influence government policies, support FDA initiatives, and ensure FSHD remains a priority. Share your story, connect with policymakers, and help us create a world where everyone with FSHD has the opportunity to thrive.