Newly Diagnosed with FSHD?

We are here to help!

Living with facioscapulohumeral muscular dystrophy (FSHD) can be challenging, but you’re not alone—many people with FSHD can lead full and active lives. With the right support and resources, you can, too.

Whether you have a new FSHD diagnosis or have been living with FSHD for some time, we understand that you may have a mix of emotions, including relief, anger, sadness, fear of the future, and even loneliness. If you are the parent of a child who was just diagnosed with FSHD you might also share these similar emotions. Whatever your feelings, they are normal and you are not alone.

Do you have a question, but you’re not sure who to ask? Looking to find someone else in similar circumstances? Want to connect with another parent of a child with Early-onset FSHD? Please contact us with your questions or connect with an FSHD Navigator and get connected with a real person! We are here to journey alongside you and give you the resources you need to live your best life with FSHD.

For specific questions regarding your health or care, we encourage you to 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 :

Find your people, find your support

Living with FSHD can feel overwhelming at times, but you don’t have to go through it alone. Our community is filled with kind, caring people who understand what you’re facing—because they’ve been there too. Together, we share hope, strength, and support. No matter where you are on your journey, there’s a place for you here. Find the group (or groups!) that feel right for you and join us. We can’t wait to meet you!

  • Local Chapters: Led by individuals living with FSHD and their loved ones, our local chapters create a strong support network in communities across North America. These groups host events, organize programs, and offer safe spaces to connect. Find a chapter near you and start building connections today!
  • The Gathering Place: No matter where you are on your FSHD journey, there’s a place for you here. We’ve partnered with incredible volunteer leaders from across the country—and around the world—to create groups tailored to your needs. Each month, these groups meet online to share stories, exchange ideas, and support one another.

You have the power to make a difference

FSHD may be a part of your life, but you can take action to shape your future. There are so many ways to get involved, find support, and make an impact:

  • FSHD University FSHD University is your go-to place for learning about the science of FSHD and the best ways to live well with it. Our three “departments”—Physical Health, Wellness, and Research—are filled with wisdom from real people who understand this journey firsthand.
  • Join Events Near You – Whether it’s a local gathering or a national conference, our event calendar is full of opportunities to connect, learn, and grow.
  • Stay Connected Online – social media can be a lifeline! Join our online communities on Facebook, Instagram, and Twitter to find encouragement, share experiences, and connect with others who truly understand.
  • Walk & Roll to Cure FSHD – This event is more than just a walk—it’s a movement! Families, friends, and communities come together to raise awareness and support progress. Find a Walk & Roll near you and be part of something bigger than FSHD!

You are never alone on this journey. Take the next step today—we’re here to journey beside you!

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