FSH Society brochures and publications
For printed copies, please contact the FSH Society. Click to download:
- About FSHD
- FSH Society Medical Alert card
- Physical Therapy and FSHD brochure
- Resources for FSHD patients & families
- Evidence-based care guideline + online resources
- Health Tips
- A Guide for Friends and Family
- A Guide for Schools
- FSHD Fact Sheet
- Early-onset (infantile) FSHD Fact Sheet
- Managing FSHD: One Patient’s Perspective, by Howard Chabner
- Resource list for Navigating Intimate Relationships, by Hilary Michels
- The decision to stop working, by Howard Chabner
- FSHD Tissue Donation Registry
- Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner
Medical society publications. Useful references to share with your doctor.
- Evidence-based FSHD care guideline – Summary for clinicians.
- Evidence-based FSHD care guideline – Summary for patients & families.
- 171st ENMC International Workshop- Standards of care and management of FSHD
Books by and for patients
- The Wisdom of a Loving Heart: Poetry, Prayers, and Prose from a Transcendent Life Unbowed by Muscular Dystrophy Disability, by
- The Graceful Art of Falling (paperback), by L. White
- The Graceful Art of Falling (Kindle edition), by L. White
- Climbing Mountains: My Final Year at the University of Derby (Kindle Edition), by Sarabjit Parmar
Websites (please contact us to recommend web resources):
- Genetic Alliance Advocacy Atlas – A great toolkit of resources for healthcare accessibility, insurance, education services, legislative advocacy, employment success.
- Maine Adaptive Sports & Recreation
- Supporting Deaf and Hard of Hearing Students
International FSHD and Muscle Disease organizations