SMA: Personal Stories

People from MDA's SMA community share their experiences in an effort to raise awareness of the disease and its effects

Stories of strength: Reagan Imhoff and Juan Morales.
Article Highlights:
  • People from MDA's SMA community share their experiences in an effort to raise awareness of the disease and its effects.
  • Blogs written by young people with SMA address a number of issues involved with transitioning from childhood to adulthood.
  • Video profiles of people with SMA who appeared on the 2012 MDA Show of Strength, and previews of SMA profiles on this year's Telethon, tell powerful stories. People with SMA will be featured in a number of profiles on the 2013 MDA Show of Strength Telethon Sept. 1, at 9/8c on ABC.
  • This article is part of a special Quest feature, which contains three additional stories: SMA: Full Speed Ahead, Raising the Voice of the SMA Community and SMA: Increasing Life Span Through Informed Care and Early Detection.
by Amy Madsen on August 29, 2013 - 10:37am

The experiences of people with spinal muscular atrophy (SMA) teach and help raise awareness about the disease, and are inspiring — and often entertaining — as well.

For a wealth of personal stories, anecdotes and perspectives about transitioning to adulthood with a muscle disease, check out the MDA Transitions Center blogs penned by members of MDA's SMA community:

SMA on MDA's Telethon, past and present

This year, MDA has selected three people with SMA to be profiled on the MDA Show of Strength Telethon, which airs Sunday, Sept. 1, 9/8c on ABC. By telling their stories, these remarkable individuals help inform viewers about the disease, and raise awareness of the tremendous research progress being made and the pressing need to ensure it continues.

Eight-year-old Reagan Imhoff has type 2 SMA and lives in New Berlin, Wis., with her parents, Joe and Jenny. Reagan loves to dance, sing, draw, read, play with friends, go on adventures and see new places, but her favorite thing to do is dance. She serves as MDA Goodwill Ambassador for Wisconsin, and participates in numerous MDA-related fundraising and awareness programs. From her power wheelchair, Reagan performed a dance on the 2012 MDA Show of Strength. Here’s a promo of her appearance on the 2013 show.

Juan Morales of Pembroke Pines, Fla., received a diagnosis of SMA when he was 5 years old. As a troubled teenager, Morales struggled to find purpose in his life until he attended MDA summer camp, where he discovered his independence, found self-acceptance and rekindled the relationship with his spirit. Now 28 years old with a master's degree in psychology from Florida International University (FIU), Morales works to help troubled teens in South Florida high schools through his Counseling, Psychology and FIU Youth Development Project. Here’s a sneak peek at his 2013 profile.

Three-year-old Cooper Somers lives with his mom, Crystal, in Houston, Texas. Cooper has type 2 SMA and attends MDA clinic, which Crystal says has been a vital part of their lives with time-efficient "one-stop shopping" that allows them to see all of Cooper's doctors and experts in one location. With help and support from MDA, Crystal is working to be the best mom she can be as she builds a foundation for Cooper to live a satisfying, purposeful life, especially after the loss of his dad in a car accident. Here’s a preview of Cooper’s 2013 telethon profile.

While you're waiting to see Reagan, Juan and Cooper on the 2013 telethon, you can watch a video profile from the 2012 show of Angela Wrigglesworth. Wrigglesworth, who has type 2 SMA, is a fourth-grade teacher at Klenk Elementary School in Houston and is a passionate advocate for MDA and women with disabilities. Check out Kennedy Healy's profile, also from the 2012 show.

Be sure to watch for more SMA connections on MDA’s Facebook page.

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