An expression of the live unlimited spirit, stories and voices of the MDA community
Jordan Smith, winner of the ninth season of The Voice singing competition on NBC, closed out our January 29 event in New York with an emotional rendition of Miley Cyrus’s “The Climb.” The song’s lyrics — about obstacles and overcoming them despite great odds — resonated with our audience of families and supporters. Jordan, who once told a . . .
If you are interested in muscular dystrophy research, you need to know about the MDCC… What is the MDCC? You may have previously come across the acronym “MDCC” posted on MDA’s website or social media pages. MDCC stands for the Muscular Dystrophy Coordinating Committee. The Committee was established under the MD-CARE . . .
Thank you to everyone who participated in advocacy in 2015. You have each played an important role in bringing about policy changes that help save and improve the lives of kids and adults living with muscular dystrophy, ALS and related muscle-debilitating diseases. Through thousands of letters and emails to your members of Congress, in-person meetings . . .
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 . . .
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 . . .
At MDA, we are beginning 2016 with families at the heart of our mission – literally. The heart in the middle of our refreshed logo symbolizes the kids and adults living with muscular dystrophy, ALS and related life-threatening diseases we fight for every day. We also begin the year with new offerings and enhancements to . . .
Investigators are seeking participants for a new phase 2 clinical trial, sponsored by Cytokinetics, to test the investigational drug CK-2127107 in people with types 2, 3 or 4 spinal muscular atrophy (SMA). CK-2127107 is a fast skeletal muscle troponin activator, designed to increase the ability of muscle to contract by sensitizing it to calcium. In . . .
It’s Christmas baking day today. Actually, the preparations started a few days ago, with a shopping trip, of course. Then, last night, Katherine helped me make a batch of Shortbread Cookies using my grandmother’s recipe. We also made a batch of pastry dough for the mince tarts and butter tarts planned for today. So now . . .
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 . . .
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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