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Spinal Muscular Atrophy News

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Joe Slay

June 28, 2017

FightSMA 2016 Washington Update and Fall Outlook

The following is a look at what's going on this fall in Washington, D.C. that is related to Spinal Muscular Atrophy research.

SMA Issues for Young Adults [VIDEO]

Spinal Muscular Atrophy presents a wide variety of issues its victims and their families.  In this video, recorded during the 2016 FightSMA Annual Research Conference, a panel of parents and professional discusses those issues.

Legislation Introduced to Implement NPRNA

FightSMA is excited to report that today Senators Roger Wicker (R-MI) and Sherrod Brown (D-OH) -- the lead Senate sponsors of the National Pediatric Research Network Act (NPRNA) -- are introducing legislation requiring the National Institutes of Health (NIH) to implement the law.

One SMA Family’s Story: From Loss to Hope

All SMA families have a story and their own individual struggles.  We'd like to introduce you to the Kemps, a family that has gone from loss to hope, losing one daughter to SMA but having hope that a second SMA child will have a different life.