Many people affected with Myotonic Dystrophy get help from the MDA the Muscular Dystrophy Association. They have clinics all around the United States which are accessible to all even those without funds. They can also help with wheelchairs and other resources. They run summer camps for kids which is awesome as well. Here is a video that a couple that is affected with myotonic dystrophy has made about their experience with MDA
Here are some resources that can help with families that need help. Help is also available from the Myotonic Dystrophy Foundation, a group which has a lot of specialized knowledge on this disease.
Resources for Families
MDA publishes a variety of materials for individuals and families affected by neuromuscular diseases. Most publications are available free online or through your local MDA office.
Quest magazine is an excellent resource for information about parenting, education, activities and adaptive products. The magazine is mailed quarterly to all those registered with MDA and also is available online at quest.mda.org. Search for stories by category or keyword, and browse back issues.
Other MDA publications geared to the needs of children include:
A Teacher’s Guide to Neuromuscular Disease (available in print and online)
Designed to be given to your child’s teacher, this booklet explains the specific ways in which muscle disease can impact a student’s performance and offers suggestions for accommodations. Available in English or Spanish.
Everybody’s Different, Nobody’s Perfect (available online)
This bilingual story for young children looks at all the ways in which children are unique, whether or not they have disabilities.
Hey! I’m Here Too! (available online)
This booklet for brothers and sisters of children with neuromuscular disease explains what’s happening to their siblings and acknowledges their feelings. Available in English or Spanish.
Travis: I Got Lots of Neat Stuff (available online)
Written by the mother of a boy with muscular dystrophy, this bilingual picture book helps children realize that life can be fun even with muscle disease.
Visit mdahops.org, or contact your local MDA office to find out more about this curriculum for young children, which is both a fundraising activity and a way to teach disability awareness.