An expression of the live unlimited spirit, stories and voices of the MDA community
With a robust therapy development pipeline and more potential treatments moving forward, MDA believes it is critical that the national programs that support newborn screening efforts in every state have the necessary funding to help ensure all babies have access to life-changing and life-saving therapies.
This SMA Awareness Month, meet the Medina family, whose two sons both live with SMA Type 1.
Twelve non-partisan patient and provider groups representing millions of Americans issued the following statement today on the “skinny repeal” legislation the Senate will consider this week.
Towering 19,000+ feet over the African countryside, Mt. Kilimanjaro is one of the world’s most daunting peaks. For 26-year-old Jared King of New York City, climbing the mountain is a worthwhile challenge to undertake and represents the fulfillment of two longtime personal goals.
“My husband and I always tell people this because it is the truth: Henry is our hero,” says Stephanie Betts, an Team Momentum runner and proud mother of son Henry who lives with congenital muscular dystrophy. “He is incredibly strong. Our quote on the back of our Henry’s Heroes shirts states, ‘True strength is in the soul and spirit, not in muscles.’ He is an amazing kid who has the best attitude that just draws people in. We are so incredibly lucky to be his parents.”
Ray Spooner, a certified nurse midwife who has ushered thousands of babies into the world, took the Ice Bucket Challenge in summer of 2014 to raise awareness about ALS. At the time, ALS “was just of jumble of letters to us,” said Ray’s wife of 33 years, Rae. Soon though, those letters would take on a . . .
“My time with Team Momentum — I love it. It’s an all-year event for me,” Pat says. “The people you meet, the families you meet, the staff at the MDA — it’s all incredible. It’s the most inspiring thing I’ve ever been a part of. I explained to my wife after the first time I ran the Chicago Marathon that I feel like I have this cup of good feelings in my life, and that weekend, it overflows.”
Accessible travel blogger, Curb Free With Cory Lee, shares his thoughts on Morgan’s Inspiration Island.
Health Care Reform Must Be a Bipartisan Effort, MDA and 14 other nonpartisan groups warn
Fifteen nonpartisan patient and provider groups representing millions of Americans issued the following statement on July 17 on the Senate’s proposal to repeal the Affordable Care Act (ACA)
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