Little Girl with Rare Genetic Muscle Disease to Serve For Second Year as MDA’s National Goodwill Ambassador

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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Last year, 2014, an inspiring 9-year-old girl from Wisconsin travelled all over the United States as one of the ambassadors of the Muscular Dystrophy Association. This year, she resumes her advocacy as a National Goodwill Ambassador, determined to strengthen awareness and support for muscular dystrophy, which she was diagnosed of when she was still a baby.

Reagan Imhoff, together with her parents, Jenny and Joe Imhoff, has visited over 10 cities as a special guest at almost 20 events. The past year gave her opportunities to speak with some of the most influential national partners and supporters about the Association’s mission to help those struggling with muscular dystrophy, just like her. Little Reagan was able to meet Bret Michaels, Jason Derulo, Carrie Underwood, and held an audience with 10,000 delegates of the National Association of Letter Carriers. She was also invited to throw the first baseball pitch at the Houston Astros and Milwaukee  Brewers game. The events she attended last year include those of Lowe’s Home Improvement, CITGO, Harley-Davidson, and the International Association of Firefighters – all proud sponsors of the Association.

“MDA is honored to have Reagan and her parents represent the individuals and families we serve,” said Steven M. Derks, the President and CEO of the Muscular Dystrophy Association. “We are deeply grateful they have agreed to serve a second term and will continue to share their story, encourage and thank our supporters and bring new people to the fight. It’s been wonderful to watch Reagan shine in this role. Reagan, Jenny and Joe personify our mission to save and improve the lives of those fighting muscle disease as we find treatments and cures, support families and rally communities.”

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Reagan was diagnosed with Spinal Muscular Atrophy (SMA Type II), a progressive disease that causes significant muscle weakening and loss of function. It can progress to respiratory failure as the muscles responsible for breathing lose functionality, difficulty swallowing, and weakness in the muscles of the back, leading to increasing spinal curvature. Barely 10 years old, Reagan is already dependent on a power wheelchair, feeding tubes, and BiPap respiratory assistance.

Despite the status of her condition, Reagan is determined to fulfill her 2015 role as the Association’s 39th National Goodwill Ambassador, which started from her serving 3 terms as the Goodwill Ambassador of the state of Wisconsin. It was during these previous terms that she was able to raise thousands of dollars worth of support from the annual Muscle Walk program of the MDA.

Reagan said, “I’m really excited because I get to meet great people and I get to spread awareness about MDA and life with muscle disease, and hope for a cure. Plus, I’ll be sending more of my best friends to MDA Summer Camp.” You can stay updated on all of Reagan’s MDA adventures throug her Facebook page, Reagan’s Rally 4 MDA.