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FSHD Connect Conference

Our Promise

30th Annivaersary Badge

As long as we are here, no patient need ever face this disease alone.  The FSHD Society is deeply committed to working with ingenuity and integrity to accelerate research leading to treatments by 2025 and eventually a cure.

It is the generous support - gifts of time, talent, and treasure - from patients, families, friends, major donors, and sponsors, that make this imperative work possible.

Our statement on Inclusivity and Equity.

Our Vision

A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)

Our Mission

Find treatments and a cure for FSHD while empowering our families

Our Core Values

Research | Community | Urgency

Our Strategies

  • Accelerate the development of treatments and a cure for FSHD
  • Increase, engage, and empower our stakeholders
  • Aggressively leverage and expand resources to support our Mission

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. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.

The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

Our Focus Areas

Accelerating research toward treatments

  • Therapeutic Accelerator. We bring all of the stakeholders together to focus on removing obstacles to the success of clinical trials and regulatory approval of FSHD therapies. PACT, or Patients Accelerating Clinical Trials, is our patient-focused arm of the Therapeutic Accelerator.
  • Clinical Trial Readiness. We invest in projects and infrastructure to advance clinical trial readiness. Priorities include the Clinical Trial Research Network; industry collaborative workshops to speed up development of genetic testing, biomarkers, natural histories, and imaging markers; and programs to develop “trial ready” patient communities.
  • Research Funding. We award grants to the best basic research to drive understanding of the disease, identify therapeutic targets, and develop the tools needed to translate discoveries into treatments.
  • International Research Congress (IRC). We host the world's premier platform on FSHD research every year to promote rapid communication of research advances, encourage collaborations, and set research priorities for the future.
  • Voice of the Patient Report. We organized a landmark externally led Patient Focused Drug Development meeting where patients and families gave in-depth testimony before the FDA on the impact of FSHD and what they seek in future treatments.

Activating and empowering our stakeholders

  • Strengthening communities. We bring patients and families together to support one another and share knowledge. We train and empower volunteer leaders to become effective advocates and fundraisers in their communities.
  • Knowledge is power. We publish authoritative news and brochures, and organize meetings to educate patients and families about diagnosis, managing symptoms, and clinical research. These include our national chapter program, FSHD 360 conferences, and FSHD University, our patient education program.
  • No one need face this disease alone. We are available to patients and families via phone, email, and social media. We connect people through our chapter network and facilitate a thriving online community we call the Gathering Place, volunteer-run groups with thousands of members.
  • Advocating for action. Our co-founder Daniel Perez serves on the presidential Muscular Dystrophy Coordinating Committee which meets annually to assess progress on all of the muscular dystrophies. We work closely with NIH and FDA officials, and advocacy organizations worldwide to push forward policies and legislation to help our community.

Our Impact

The FSHD Society has funded over $12 million in research initiatives that have propelled us into the era of treatment discovery and development. Our work has contributed to identifying the genetic mechanism of FSHD, development of animal models, validation of clinical trial endpoints, and early-stage drug discovery research. Other signature achievements include co-authorship of the 2001 MD CARE Act that mandated federal attention to all of the muscular dystrophies and led to the NIH-funded Wellstone Cooperative Centers for Muscular Dystrophy Research, the 2015 publication by the National Academy of Neurology of the first evidence-based FSHD care guideline, and the nationwide FSHD Clinical Trial Research Network in 2016. For more details, please see our annual Donor Impact Reports.

Testimonials

Belinda Miller

"There isn’t enough room to write about how much this organization has done and is doing for all of us with this debilitating disease. All I can say is that with their support, you are never alone."

Deborah Schwartz

"I was diagnosed two years before the Society was founded. At Carol Perez’s urging, Dad and I went to the conference in Massachusetts. I had never met anyone with FSHD before and was terrified. But I met a warm, vibrant community who were determined to fund research for our futures.”

Allison Gatrell Calder

"Wonderful organization who provides excellent support for our family and is making a world of a difference in the treatment and cure of this disease. The staff and volunteers are so engaged and kind."

Zoe Darmody

“I would like to say thank you to the FSHD Society and members. I always read the new information that is posted, and it gives me great comfort. I started showing the signs of FSHD when I was 11 years old. By the time I was 14, I had to give up all sports and was told that I would be in a wheelchair by the time I was 18. I am 27 now, and I am still walking and working. I have been told a lot that I can’t do things, which makes me even more determined to prove them wrong. My journey hasn’t been easy, but I’m getting to the place where I have to do the best with what I have. It is wonderful to know that there are people out there who give so much to help people with FSHD, and again, I would like to say thanks.”

Barbara Rosh Poling

“You’re all doing a great job! We’ve appreciated the help we’ve received from the Society since we first heard of FSHD almost three years ago when my son was first diagnosed. Thank you so much!”

Tena Davidson

“The FSHD Society has been such an awesome resource for me. I read and reread much of the information on your website. I have given my doctors copies of the Physical Therapy brochure. I appreciate having access to the most current information that you provide. The newsletters are also very important to me, and I read them faithfully.”