Nine-Year-Old SMA Type 2 Patient Reagan Imhoff Chosen 2015 MDA National Goodwill Ambassador

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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2014 National Goodwill Ambassador announcement at Harley-Davidson headquarters, in Milwaukee

2014 National Goodwill Ambassador announcement at Harley-Davidson headquarters, in Milwaukee

Nine-year-old Reagan Imhoff has been chosen as the 2015 National Goodwill Ambassador, after spending 2014 traveling across the country to give a face and a voice to the Muscular Dystrophy Association (MDA). Despite the difficulties of suffering from spinal muscular atrophy, Reagan is going to continue to speak alongside with her parents, Jenny and Joe, to support others who suffer from muscle conditions and the activities of the association.

Reagan has already become a symbol of the fight against muscle diseases, and, as the MDA’s 39th National Goodwill Ambassador, she is going to continue to speak to both national partners and supporters to advocate for more support to MDA and to improve the lives of muscle disease patients and their families, as announced by the association in a press release.

“MDA is honored to have Reagan and her parents represent the individuals and families we serve,” said MDA President and CEO Steven M. Derks. “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.”

Reagan and her parents have been dedicated to support others suffering from muscle diseases, and the family travels across the country despite the fact that the girl needs to use a power wheelchair, a feeding tube for nutritional supplementation, and BiPap to assist with breathing issues. Due to suffering from SMA Type II, which is a progressive disease of the muscle usually diagnosed in the early years of life, Reagan is at risk of problems such as respiratory muscle weakness, swallowing muscle weakness, and back muscle weakness with progressive spinal curvature.

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“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,” Reagan said when asked about her second term working with the MDA. “Plus, I’ll be sending more of my best friends to MDA Summer Camp,” she added.

Reagan is a regular attendant at the MDA’s summer camp, and she shares the stories and memories about it. In addition to her work with MDA and summer camp, she also likes to read, dance, draw, swim, and participate in musicals, as many other girls her age. She also has a collection of American Girl dolls, and she takes advantage of her travels to visit stores across the U.S. and enlarge it.

The nine-year-old girl has traveled more than 10 cities during 2014, to be at 20 different events, in which she met celebrities like Bret Michaels, Carrie Underwood, and Jason Derulo, spoke to 10,000 National Association of Letter Carriers delegates, and was selected to throw the first pitch at Houston Astros and Milwaukee Brewers games.

Reagan also attended MDA events with national sponsors, including Lowe’s Home Improvement, CITGO, Harley-Davidson, and the International Association of Firefighters (IAFF). She was also the MDA organization’s Wisconsin State Goodwill Ambassador for three terms, and has helped raise thousand of dollars at the Milwaukee Muscle Walk, with her family and friends.

Learn more about Reagan on her Facebook page at Reagan’s Rally 4 MDA, and by watching her presentation video below: