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Your Voice, Your Vote
Voting is more than a civic responsibility. It is a declaration of presence, power, and participation. The decisions made by elected officials touch nearly every aspect of our lives—from access to healthcare and medical research to community-based services, caregiver support, transportation, education, and employment. For people living with disabilities, however, participating in an election may…
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3 things that make my life as a Duchenne MD caregiver easier
With seven children — Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4; three of whom have Duchenne muscular dystrophy (DMD) — I have entered the zone of a veteran parent and caregiver. Max, Rowen, and Charlie were diagnosed with DMD in 2010 when they were just toddlers and…
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Treatment for FSHD named orphan drug, put on FDA fast track
The U.S. Food and Drug Administration (FDA) has granted both fast track and orphan drug designations to Scholar Rock‘s apitegromab as a potential treatment for facioscapulohumeral muscular dystrophy (FSHD), a disease type that characteristically affects muscles of the face and upper body. The experimental muscle-targeted therapy, which aims to improve motor function in FSHD, is…
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Guest Voice: 10 years after my son’s desperate plea to the FDA
On April 25, 2016, my son Billy stood at a podium in a hotel ballroom outside Washington, D.C., and told a room full of advisers from the U.S. Food and Drug Administration (FDA) something no 15-year-old should have to say out loud. “FDA, please don’t let me die early,” he said. This September marks 10…
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Community Bingo Challenge
The post Community Bingo Challenge appeared first on Muscular Dystrophy News.
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Genetic counseling for muscular dystrophy
Genetic counseling for muscular dystrophy (MD) can help you and your family get clarity, guidance, and emotional support when navigating a diagnosis. MD is a broad term for a group of more than 30 inherited genetic disorders that cause progressive muscle weakness and loss of muscle control. MD results from mutations in genes that encode…
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Traveling with muscular dystrophy
For people living with muscular dystrophy (MD), traveling can be challenging. However, with planning, packing, and prepping, traveling with MD is possible. Planning should reflect mobility, breathing, and cardiac issues, as well as medication, equipment, and personal care needs. It is vitally important that both patient caregiver understand what needs to be done before and…
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Fatigue and muscular dystrophy
Although people face a range of physical and emotional challenges when living with muscular dystrophy (MD), one of the most common is fatigue — a deep exhaustion that rest cannot relieve. Around 7 in 10 people with a muscle-wasting condition say that fatigue causes the most daily problems among MD’s long list of symptoms. MD…
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My road trip to finding a community with Duchenne
In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full…
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Ventilation for muscular dystrophy
In some types of muscular dystrophy (MD), weakened respiratory muscles can lead to hypoventilation — breathing that is too slow or shallow to deliver adequate oxygen and remove carbon dioxide. Ventilation for MD supports lung function by delivering high-pressure fresh air into the airways via a tube attached to a mouthpiece or a tracheostomy opening.…
