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TAGS
ambassador
charcot-marie-tooth
disorder
muscular dystrophy
Date
January 26, 2012

A New Face for MDA

A 13-year-old has become an ambassador for fighting this disease.
Transcript

Scott: At first glance, Rene Runions is just like most 13-year-olds. But have a conversation with her and you will learn her path to middle school was a lot different than most.

Rene Runions: I walked like this by my braces. They keep me having a flat straight, and I walk forward instead of curved.

Scott: Rene has spent most of her life in those braces. At a young age, she was diagnosed with a disorder called Charcot-Marie-Tooth. It is a nerve disorder that affects the muscles and it causes muscle weakening.

Rene: I have trouble balancing and I can’t run that long. I can’t jump rope, but I just make the most out of it.

Scott: As you can see, those challenges didn’t bring her down. They motivated her. She got involved, walking in muscle walks and even heading to a camp for teens with these types of disorders.

“As far as her mentality goes with this, she is great. She hasn’t let it affect her at all.”

Scott: And that positive attitude caught the attention of the Muscular Dystrophy Association, an organization that raises money for research into cures for diseases like Rene’s. The charity has named her the 2012 Goodwill Ambassador for the state of Illinois.

Rene: I get to go around and tell people about my disease and how they can help.

Scott: Rene’s mom, Teri, has the same disorder. She says she can’t think of a better spokesperson for the cause.

Teri: She’s kind of a role model to me. So, I’m hoping she’s a role model to everyone else.

Scott: Rene hopes to help the MDA find a cure by sharing her story with others.

Rene: I don’t want people to think that just because you’re in a wheelchair you have a problem. Like, I want them to know the reason why and just what they can do to make me — make everybody — feel more like a person.

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