FSH Society brochures and publications
For printed copies, please contact the FSH Society. Click to download:
Health care toolkit
- About FSHD (in Spanish; in Chinese)
- FSH Society Medical Alert card
- Physical Therapy for FSHD brochure (in Chinese)
- Resources for FSHD patients & families
- Evidence-based FSHD care guideline + online resources
- Health Tips
- Letter requesting insurance coverage for genetic testing (Word doc templates)
- FAQs on medicare coverage for maintenance physical therapy
- Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders
- An Overview of Anesthetic Concerns by Raymond Huml
- FSHD Fact Sheet
- Early-onset (infantile) FSHD Fact Sheet
- Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner
Useful professional publications to share with your doctor
- Evidence-based FSHD care guideline – Summary for clinicians.
- Evidence-based FSHD care guideline – Summary for patients & families.
- Evidence-based FSHD care guideline AAN tools and materials
- 171st ENMC International Workshop- Standards of care and management of FSHD
Guides to Living with FSHD
- You Are Not Alone. A Guide for the Newly Diagnosed
- FSHD and Social Support: A Guide for Friends and Family
- A Guide for Schools
- 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
- Tips for Air Travel With a Power Wheelchair by Howard Chabner
- Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke
- Yahoo Group Bulletin Board, started in 2004, this is a trove of advice and tips shared by patients and caregivers.
- Our YouTube channel has dozens of educational videos
- Muscle Activation Exercises with Lynnette Rasmussen FSH Society
- FSH Society Michigan Meeting – Waking up your muscles
- FSH Society – Introduction to yoga for people with FSHD
- Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD
- Facial surgery methods for Facioscapulohumeral Muscular Dystrophy
- FSH Society webinar with Dr Rabi Tawil
Please contact us to recommend more web resources.
- The Resource Finder at Kennedy Krieger Institute
- BreatheNVS site on noninvasive ventilatory support for neuromuscular patients, authored by John Bach, MD.
- Canadian Alternatives in Noninvasive Ventilation–An excellent resource for managing respiratory issues in neuromuscular disease.
- Genetic Alliance Advocacy Atlas – A great toolkit of resources for healthcare accessibility, insurance, education services, legislative advocacy, employment success.
- Neuromuscular Centre Midlands – A UK-based charity founded by an individual with FSHD, which provides physiotherapy support to patients.
- Maine Adaptive Sports & Recreation
- Supporting Deaf and Hard of Hearing Students
- Disaster Safety for People with Disabilities (American Red Cross)
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
International FSHD and Muscle Disease organizations