Support Groups
MDA IS HERE TO HELP

MDA support groups offer those with neuromuscular disorders and their families opportunities to meet and talk with others facing similar challenges. Parents of children with DMD find much helpful information at MDA support groups as well as emotional support from other families experiencing the same situation. Support groups help parents feel less isolated and gain reassurance that they can meet the challenges ahead.

One parent commented, "It's just so good for us to have a place to say what we're feeling and have people understand because they face it daily, too."

At MDA support group meetings, parents and other caregivers can share tears and frustration, encouragement and hope, as well as practical tips on everything from recipes to respirators.

MDA's 200 support groups across the country offer a level of understanding and encouragement that parents may be unable to get from their own families, friends, religious communities, doctors or books. Parents share their questions and experiences about medical issues such as surgery, drug therapies, exercises, the latest in research, use of wheelchairs or braces; school problems, their child's social adjustment and behavior, accessible parks and recreational sites, the future; the needs of healthy siblings, talking with their children about the disease, effects on their marriages and dealing with extended family members; and their own pain, loneliness, hope and fear.

MDA support group meetings include a time to share personal and immediate concerns, and some feature a guest speaker or informational programs. Groups are designed to be as comfortable as possible for participants: No one is required to speak and confidentiality is carefully maintained.

In many communities, MDA provides child care during meetings to enable more parents to attend.

One parent said this about her first MDA support group meeting: "When I left that night, even though I had just met these people for the first time, I felt like it was a new family."

Call the health care service coordinator at your local MDA office to find out the schedule of support groups in your area. The HCSC can also help you find other opportunities to meet local families living with Duchenne muscular dystrophy.