Lighting the Way to a Cure

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We Are Here to Help!

Whether you have a new diagnosis of facioscapulohumeral muscular dystrophy (FSHD) or have been living with FSHD for some time, we understand that you may experience a range of reactions, including anger, sadness, fear of the future, and feeling isolated with the disease. Or you may be the parent of a child with FSHD or Early-onset FSHD and wish to speak with another parent. Whatever your feelings, they are normal and you are not alone.

Please contact us with your questions. We are ready to listen and support you in your journey. Please understand, however, that we are not healthcare professionals and are unable to provide medical advice, for which you should consult your doctor or other healthcare professionals.

Information at your fingertips

We have a number of informative publications that may help you on your journey.
All of these and more can be found in our online Patient Library:

  • FSHD Advocate magazine
  • You Are Not Alone. A Guide for the Newly Diagnosed
  • About FSHD Brochure  (Available in English or Spanish)
  • Physical Therapy for FSHD brochure
  • FSHD & Social Support: A Guide for Friends & Family
  • A Guide for Schools
  • Our blog is a wealth of information that can inform, empower and improve your FSHD journey
  • You may also enjoy listening to the FSHD Radio podcast. 

Connect Locally

The FSHD Community is vibrant and engaging and we are just waiting to welcome you to the family! You may find comfort and support by connecting with others who understand what you are facing. Our Local Chapters are all led by patients and/or their families. They host programs, put on events, and run support groups. See if there is a chapter in your area and get connected.

Get Involved

There are many ways to get plugged in and get involved.

  • Local, regional and national education and support events can be found on our event calendar.
  • Social media can be a lifeline to others who understand FSHD and its impact. Plug in to our online communities on Facebook, Instagram, and Twitter
  • Participating in a Walk & Roll is a life-changing event that unites families, friends, neighbors, and local businesses to forge powerful connections and strengthen our families and our community.
    Find a walk near you and help drive progress.
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Join Our Research Contact Registry

To crack the code of FSHD, patients are absolutely essential. Every breakthrough thus far has been made because patients stepped up to the plate. As someone who lives with FSHD, you are in a unique position to help move the needle closer to treatments and a cure.

The FSHD Society maintains the world’s largest contact registry of FSHD patients and families. We contact members regarding research studies and clinical trials in their area. Please take this important step and join the FSHD Society's Research Contact Registry today!

SIgn Up Today!