Meet Kasey Bennett

Kasey Bennett loves football. In fact, it was during one of his games that his parents noticed there was something different about their young quarterback. “He couldn’t keep up with the other kids,” says his father. Soon after, Kasey was diagnosed with DMD. The disease has taken him out of the game but it hasn’t . . .

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Hope for Zane

Zane Jacobs is a “wild and crazy” 7-year-old who “loves to get dirty and cause absolute chaos.” Though he is affected by DMD, he and his family are determined to make the most of their time together, whether that’s playing football in the front yard or swimming at the waterpark. When not horsing around with . . .

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Meet Ernie Johnson

People may know TNT’s Ernie Johnson as the NBA host who shares the stage with pros like Charles Barkley and Shaq. But it’s what goes on behind the scenes that makes him a star in our eyes. This touching story gives us a glimpse into Johnson’s life off-screen as a devoted father of six who . . .

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Meet Warner Smith

For 42-year-old Warner Smith, treatments and cures for ALS can’t come fast enough. Like any doting father, Warner wants to be around for all his young daughter Carlee’s milestone moments. He wants to teach her to drive, see her go to prom and walk her down the aisle at her wedding. Every moment is precious . . .

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Five Questions with SBMA Researcher Diane Merry

Diane Merry, associate professor at Thomas Jefferson University in Philadelphia, is working to identify therapeutic opportunities to promote normal androgen receptor function while preventing the toxic effects of polyglutamine expansion in spinal-bulbar muscular atrophy (SBMA). With GlaxoSmithKline, Merry will test small molecule compounds that activate an enzyme called SIRT1 in cell and mouse models of . . .

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Five Questions with CMD Researcher Liza Pon

Liza Pon, professor in the department of pathology and cell biology at Columbia University in New York was awarded an MDA research grant totaling $300,000 over three years to study the underlying mechanisms at work in CHKB congenital muscular dystrophy (CMD). Pon also will test whether therapies that promote function of a protein known as . . .

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Reagan Imhoff

Home and Family Reagan, 10, is the daughter of Jenny and Joe Imhoff. She is from New Berlin, Wisconsin. Birthday May 11, 2005 Diagnosis Reagan has spinal muscular atrophy (SMA type 2), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Type 2 SMA is a progressive muscle disease . . .

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Elizabeth Shirk

Elizabeth earned a degree in graphic art from San Diego State University. She first specialized in printmaking and received numerous awards for her works, including Best of Show. In 1990, Beth began working in watermedia, and she frequently had works in juried exhibitions. Her husband, Mike, also has paintings in the MDA Art Collection, and . . .

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SMA – Kevin Foust, Ph.D.

Kevin Foust, assistant professor in the department of neuroscience at Ohio State University in Columbus, was awarded an MDA research grant totaling $293,378 over three years to investigate disruption of gut bacteria in spinal muscular atrophy (SMA). The gut microbiome is the collection of organisms that inhabit a healthy gastrointestinal (GI) tract. Dysbiosis, or changes . . .

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