A Letter to Mom on Mother’s Day
Chris Anselmo, who lives with Miyoshi Myopathy, shares a letter to his mom and all MDA moms this Mother’s Day.
Strongly
An expression of the live unlimited spirit, stories and voices of the MDA community
A Mother’s Powerful Support in the Face of Muscular Dystrophy
Amy Curran shares a heartfelt thank you to her mom, Ann, who has been a rock throughout her and her three siblings’ journeys with GNE Myopathy.
United by Myotonic Dystrophy, a Daughter Honors her Mom on Mother’s Day — and the 25th Anniversary of Her Death
In the decades since Leslie Krongold’s mother died at the age of 56, she has learned that they likely shared a neuromuscular disease — myotonic dystrophy — and, as Leslie approaches her own 56th birthday next year, she feels more committed than ever to defying the odds her my mother couldn’t.
Five Questions with ALS Researcher Fen-Biao Gao
Dr. Fen-Biao Gao was awarded an MDA research grant to study the C9ORF72 repeat expansion, which is the most common genetic mutation known to cause ALS.
“A Lot of People Care About Me:” Muscle Walk Raises Money and Teen with Myotonic Muscular Dystrophy’s Spirits
After Erica Destache was diagnosed with myotonic muscular dystrophy, her family raised a whopping $20,000 for their local MDA Muscle Walk.
Questions and Answers about Newly FDA-Approved Radicava to Treat ALS
The U.S. Food and Drug Administration (FDA) on May 5, 2017, approved edaravone (brand name Radicava) for the treatment of ALS (amyotrophic lateral sclerosis). Radicava is the first ALS treatment to be approved in the United States in more than 20 years, and is only the second drug ever approved to treat this devastating disease.
Building a Better Community in Central Florida: A Homebuilding Executive Gets More Than She Gives to MDA
Martha Moore Gomez already has a full schedule as a busy human resources executive for a homebuilding company Mattamy Homes. Work travel takes her throughout North America, but when it comes to volunteering for MDA, she says, “You make time for what’s important to you, and this is what’s important to me.”
Finding Strength When Weakness Overwhelms: Filmmaker with Mitochondrial Disease Speaks Out to Empower Others
Filmmaker Tom Caamano, who received a surprise diagnosis of mitochondrial disease in 2009, perseveres despite symptoms, which include muscle weakness and fatigue, that threatened to derail his career. Today, he is not only thriving, he’s helping others facing similar diagnoses feel empowered, too.
FDA Approves Radicava to Treat ALS
Today, on the first Friday of ALS Awareness Month, the U.S. Food and Drug Administration (FDA) approved edaravone (brand name Radicava), to treat ALS (amyotrophic lateral sclerosis). Under development by Mitsubishi Tanabe Pharma America, Radicava was approved in 2015 to treat ALS in Japan. It’s the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years.
Advocating for the Whole Community Starts with Self-Advocacy: Reflections from the MDA Advocacy Conference
Spending time in our nation’s capital with dozens of other MDA families gave me a new sense of empowerment and taught me to apply a skill I’ve already honed in my personal life to the public policy arena. It was inspiring and exciting to see so many people come together in one place to do our part in making this country a better place for people who live with muscle-debilitating diseases.
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