504 Plans What Parents Should Know
Some students with muscle diseases have IEPs (Individualized Education Plans) and some have 504 plans. What’s the difference? Should parents be concerned if the school says their child doesn’t qualify...
View ArticleNational ALS Registry Now Open
After two years of laying the groundwork, the Agency for Toxic Substances and Disease Registry (ATSDR) has opened its National ALS Registry to collect information from people living with ALS....
View ArticleNewborn Screening for DMD and BMD: MDA Needs Your Help
Early identification and treatment for neuromuscular disorders are essential to optimize health outcomes. Newborn screening, which identifies health issues via a blood test taken soon after birth, is...
View ArticleMDA Awards Venture Philanthropy Grant to AcuraStem to Develop Treatment for ALS
The Muscular Dystrophy Association has awarded an MDA Venture Philanthropy (MVP) grant totaling $300,000 over two years to AcuraStem to support preclinical development of a novel small molecule...
View ArticleArkansas to Screen Babies for SMA
This week, Arkansas Gov. Asa Hutchinson signed into law a bill, HB 1074, that requires the state to add spinal muscular atrophy (SMA) to its newborn screening panel. SMA is the No. 1 genetic cause of...
View ArticleWisconsin Sen. Tammy Baldwin Introduces Air Carrier Access Amendments Act
Last week, Sen. Tammy Baldwin of Wisconsin introduced the Air Carrier Access Amendments Act (S. 669). MDA commends Sen. Baldwin for championing this legislation that sets forth important protections...
View ArticleSupport ALS Patients: Tell Congress to Pass the ALS Disability Insurance Act...
Amyotrophic lateral sclerosis (ALS) is a neuromuscular degenerative disease that causes rapid muscular atrophy. It progresses quickly, and patients need access to all available support as soon as...
View ArticleCongress is Considering a Law to Strengthen Newborn Screening: Help MDA...
On May 2, Reps. Lucille Roybal-Allard (CA-40), Mike Simpson (ID-02), Katherine Clark (MA-05), and Jaime Herrera-Beutler (WA-03) introduced the Newborn Screening Saves Lives Reauthorization Act of...
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10 Facts About FSHD — and a Reason to Smile
An older gentleman came up to me once. I had just been on TV for the Jerry Lewis MDA Labor Day Telethon talking about how facioscalpulohumeral muscular dystrophy (FSHD) affects my facial muscles and...
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The Ups and Downs of Accessible Air Travel
/* > Cory Lee, who lives with spinal muscular atrophy (SMA), has explored 32 countries in the past five years. While traversing the globe in his 300-pound power wheelchair, Lee writes about accessible...
View ArticleThe Case for Newborn Screening
/* > Newborn screening allows babies born with life-threatening diseases to be treated before they show any signs of disease, which can lead to improved outcomes and maybe even a life free of...
View ArticleCongress Moves Forward on Newborn Screening
Last week, the US House Committee on Energy and Commerce’s Subcommittee on Health considered the Newborn Screening Saves Lives Reauthorization Act (HR 2507), a bill that would reauthorize the national...
View ArticleUS House Passes Newborn Screening Reauthorization
Thanks in large part to the work of MDA advocates across the country, the US House unanimously moved yesterday to pass the Newborn Screening Saves Lives Reauthorization Act (HR 2507). Once enacted,...
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Reporting Back from the MDA Public Policy and Advocacy Conference — and...
Two years ago, I remember looking through the photos from the MDA Public Policy and Advocacy conference, excited to see so many in the neuromuscular disease community on Capitol Hill advocating for...
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Outside the Lab
Michael Lo Sapio, father of Mikey, 7, and Reid, 5, proudly admits that he’s pushy. Both his boys live with Duchenne muscular dystrophy (DMD), which causes progressive muscle degeneration and weakness...
View ArticleA Good Beginning: Newborn Screening
Early diagnosis and treatment for neuromuscular diseases that can be treated is crucial, as the disorders are progressive and, in many cases, fatal. Spinal muscular atrophy (SMA), for example, is the...
View ArticleMDA’s 2020 Advocacy Plan
It might only be a month into 2020, but MDA’s advocacy team and grassroots advocates are already making their voices heard. We expect the next 12 months to be crucial on Capitol Hill, and we’ll be...
View ArticleMDA Advocacy in These Uncertain Times
We know families across the country, especially those in the neuromuscular disease (NMD) community, are concerned about the spread of coronavirus and its associated disease, COVID-19, and the impact...
View ArticleClinical Trials During COVID-19: What We Need From the FDA
Over the course of the last several months, the US Food and Drug Administration (FDA) has undertaken many actions aimed at slowing the spread of the novel coronavirus and ensuring our first responders...
View ArticleAll in the Family
Within our family of five, my daughter and I have a neuromuscular disease called scapuloperoneal spinal muscular atrophy (SPSMA). I was born with this rare motor neuron disease, and our precious Leah...
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