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 and recently received genetic confirmation, we understand that you may experience a range of reactions, including relief, 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 you are feeling, it is 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.
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 , Spanish, or Chinese)
- 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.
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.
- Local Chapters: Led by patients and/or their families, local chapters host programs, put on events, and run support groups in local communities across North America. Find your closest chapter and get connected.
- The Gathering Place: In partnership with amazing volunteer leaders from across the country, and across the globe, the FSHD Society has formed several groups that bring together patients, family members, and friends who are walking similar paths.
Targeted groups gather each month to share experiences, exchange ideas, offer support, and gain insights. Find the group - or groups - that appeal to you and fit where you are in your FSHD journey, then join the group and meet us online each month.
You are not helpless against FSHD. You can take action to shape your future. There are many ways to get plugged in and get involved:
- FSHD University is your center for education about the art and science of living with FSH muscular dystrophy. With three "departments" – Physical Health, Wellness, and Research – drawing on the many resourceful, creative people in our community who have earned their MDs and PhDs in living with FSHD.
- Local, regional and national 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.
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!
And when you sign up, you not only join a collective of patients who have put their hands up to drive research progress, but will stay informed and connected, learning ways to manage your health and gain a greater sense of agency over your life.