Ron Hayes didn't get a diagnosis of type 1 myotonic dystrophy (MMD1 or DM1) until he was 54, long after he had enjoyed academic and athletic success in high school and college, had earned a master's degree in public health, had married and had children, and had established himself in a career.
Looking for help as you prepare to meet with your child’s school about individual education plans (IEPs) or 504 Plans, both of which provide accommodations for students with disabilities? Well, you've come to the right place. The following list of IEP and 504 plan resources will help you get started and moving in the right direction.
If you can't print this list, contact your local MDA office to...
Jacob Gapko has compiled the first-ever bibliography of books about young people with muscular dystrophy, with help from a Carnegie-Whitney Award from the American Library Association.
Click on the title to access the bibliography:
Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography
The PACER Center reviews several e-readers
For people with reading-related disabilities, e-book readers can provide easy access to a world of literature and information. These portable devices store and read electronic books, and their accessibility features can include text-to-speech, audio-supported navigation, and enlarged print. Not all the devices offer all those features, however, so consumers need to shop carefully to find the e-...
Bookshare, the world’s largest online library of accessible books and periodicals, is free for students with qualified “print disabilities,” which include difficulty holding a book or turning pages. Bookshare offers more than 60,000 books, textbooks and teacher-recommended reading in accessible formats.
Some students with muscle diseases have IEPs (Individualized Education Plans) and some have 504 plans. What’s the difference? Should parents be concerned if the school says their child doesn’t qualify for an IEP, and creates a 504 plan instead — or vice versa?
Not necessarily. As the accompanying chart and diagram shows, there’s a lot of overlap between the two plans. The key is for parents to be...
Specialists, support groups and stimulant medications help families cope with the unusual cognitive and personality effects of type 1 myotonic dystrophy
*Many people interviewed for this article asked not to be identified to protect the privacy of affected family members.
“Everybody knows the word apathy,” says a California woman whose 25-year-old daughter’s type 1 myotonic dystrophy (MMD1, sometimes called DM1) was diagnosed just a few years ago. “People use the word loosely. I don’t think it does justice to the reality of this disease.”