Living with a rare disease can be a complicated, often expensive undertaking. While the FSHD Society can’t offer legal or financial advice, we know of some good resources to try.
There are many locally-based grant programs. Try searching for terms like “Assistive Technology” or “Accessibility Adaptations” along with your city or state.
Medicare will cover durable medical equipment (DME) as long as your doctor prescribes it.
Medicare Part BThe Tyler Screnk Foundation is a nonprofit focused on independence and assistive technologies. They manage 2 different grant programs. One is open to rolling applications throughout the year for a specific technology or device to help you remain independent. The other is reviewed annually in July, and a single grantee is selected per year.
The Tyler Screnk FoundationThe Tall Cedar Foundation is a charity that focuses on supporting families and children with muscular dystrophy disorders. They have a program called the Muscular Dystrophy Relief Fund, which allows families and children with any muscular dystrophy disorder to request up to $5,000 for financial assistance of a muscular dystrophy or neuromuscular related expense within a calendar year. You can fill out the request form on their website.
The Tall Cedar FoundationMany states have a local, nonprofit Disability Rights office – search your state for additional resources. Another great state-based resource is your local Vocational Rehabilitation office. Beyond helping with employment accommodations, they can offer many types of guidance and advocacy. Your local Center for Independent Living may also be able to provide information. A guide to your rights is also available from the US Department of Justice.
Guide to Disability Rights Laws
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