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Celebrating 25 Years of Impact: MDA’s Wings Over Wall Street Gala Honors Leaders in ALS Research and Advocacy
For a quarter of a century, MDA’s Wings Over Wall Street has brought the ALS […]
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PPMD Hosts Duchenne Early Intervention Symposium
This May, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) plans to […]
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On a rough day, insight into my sons’ life with DMD, wheelchairs
My husband, Jason, and I are parents to seven children: Lexi, 23; Max, 19; Chance, […]
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The Impact of the Continuing Resolution and Federal Budget Cuts to the CDMRP on Duchenne Research
Today, the Senate passed a Continuing Resolution (CR) that includes a 57% cut to the […]
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MDA Ambassador Guest Blog: Make Sense? Say Yes!
Grace LoPiccolo, 21, of St. Louis, Missouri, was diagnosed with CMT-1A at the age of […]
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Focus of NORD study: Rare disease community’s lived experiences
The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, […]
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My disease progression feels like barreling down a hill with no brakes
When I was 13 and my brother, Tim, was 16, we got skis for Christmas. […]
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AB-1003 trial for LGMD proceeds after positive recommendation
Asklepios Biopharmaceutical (Askbio) has dosed the first participant in the second group of a Phase […]
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Five Tips to Increase Socialization this Spring
Increasing socialization, cultivating meaningful relationships and friendships, and limiting isolation or loneliness in an increasingly […]
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Advocates Unite in Washington D.C. to Champion Duchenne Policy Reforms
PPMD, with a group of more than 150 advocates, heads to Capitol Hill today to […]
