MDA Youth Peer Groups

Teens and young adults with muscle diseases are finding new opportunities to share their world with peers and gain valuable life skills through MDA’s support group program.

MDA already hosts some 240 support groups that provide practical help and emotional support to individuals and families around the country. But in recent years, the special needs of young adults have become more apparent, said Jennifer Lopez, associate director of MDA Health Care Services.

Groups for teens and young adults help them maintain important friendships, develop social skills and plan for the future.

“We’re finding that young adults often prefer to associate with their peers to discuss ways to meet their unique needs, rather than with parents or other older adults,” she said. Hence, many areas have started support groups specifically for this age group.

16 groups and growing

Sixteen distinct older teen/young adult support groups now are operating and more are evolving, Lopez said.

The group that serves the Cleveland area has been in existence for nearly eight years, and health care service coordinator (HCSC) Jackie Simcic-Becker says it’s going strong. Monthly two-hour meetings attract an average of 10 participants in an age range from 15 to 30.

The only requirement for attending, apart from being registered with MDA, is that participants understand their own disease process, Simcic-Becker said. The rationale for the requirement is that no one should learn something (perhaps negative) about their disease for the first time in support group.

The Cleveland group got its start solely because a young man with Duchenne muscular dystrophy suggested it. Now, at the first meeting of every year, attendees and facilitators come up with a list of topics they’d like to discuss at subsequent meetings. Subjects have included such issues as dating/marriage, moving out on your own, employment, and community resources that can assist people with disabilities.

Meredith Heider, 33, the group’s primary facilitator, has spinal muscular atrophy and once was a group participant herself. She went on to earn a master’s degree in social work, and now applies her skills among people with whom she feels a kindred spirit.

Maintaining ties with friends

A new young adult support group was formed just this past summer in the Kansas City suburb of Overland Park, Kan.

HCSC Angela Hills got an overwhelmingly positive response when announcing the formation of the group. At the first meeting in September, more than 40 people showed up, she said.

“The primary purposes of the group are to give young adults the opportunity to maintain ties, to find an outlet for social interaction and to bring up concerns that may be pertinent only to their age group,” Hills said.

The group meets every other month, she said, and more attendees show up each time. “We schedule the gatherings for two hours, but we usually wind up staying for at least three because everyone finds them so valuable.”

Developing social skills

The Baltimore-area young people’s group is geared toward ages 13 to 21, and has been offering monthly meetings for about 10 years. From 10 to 15 young people usually attend each meeting, said HCSC Laurel Gaffney.

“At regular schools, these young people, because of their disability, are sometimes the odd ones out. The support group is an opportunity for them to develop social skills throughout the year; to interact with others in similar circumstances; to learn to advocate for themselves,” Gaffney said.

Teens enjoying a Halloween costume ball.

Chad McCruden was one of three people who helped form the Baltimore group. As with Heider in Cleveland, he was a group participant who later went on to become its primary facilitator. A work incentive specialist with the Baltimore organization Making Choices for Independent Living, McCruden, 35, has Friedreich’s ataxia.

“My life’s work is advocating for other people with disabilities, and teaching people about all the resources and opportunities that are available to our kids,” he said. “For me, the teen group is one of the best services MDA can provide. It exposes young people to very positive role models — people with disabilities like me who have shown that through hard work, in school and life, they can go to college, have a car, a condo, live independently, and lead a happy life.”

Be an Advocate

Like Baltimore and Cleveland, many of MDA’s existing teen/young adult support groups were started because someone in the community called MDA and expressed an interest. If you would like MDA to form a young adult support group in your area, contact your local MDA office at (800) 572-1717, to see how you can help in that process.

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