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.
We are ready to listen and support you in your journey.
Please understand that we are not healthcare professionals and are unable to provide medical advice, for which you should consult your doctor or other healthcare professionals.
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.
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.
Coping with a diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD) can be challenging, but arming yourself with information can be very powerful.
Getting some basic information about your condition can help. For a free, one-page, simple flyer about FSHD, it's most common symptoms, and basic genetics, simply fill out the form below.
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
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. Learn more and consider joining.