FSH Society volunteers are available to answer your questions and help you get through this difficult time. Our goal is to respond within 24 hours.
Whether you have a new diagnosis of facioscapulohumeral muscular dystrophy (FSHD) or have been living with FSHD, 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 Infantile 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 eager to share our own knowledge. We can also put you in touch with a member of our Peer-to-Peer Support Team. 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.
Check out our informative publications:
FSH Watch newsletters
FSHD Patient Brochure (Download in Spanish)
Physical Therapy and FSHD brochure
FSHD & Social Support: A Guide for Friends & Family
A Guide for Schools