-
Advocating for change with Duchenne muscular dystrophy
In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight,…
-
When it comes to patient safety, we can’t forget medical transport
Living with Duchenne muscular dystrophy means every trip to the hospital is key to my survival. From heart scans to routine medical appointments, leaving home is never simple. I rely on my mom to ferry me to every checkup in our family’s wheelchair-accessible vehicle. Earlier this year, when our vehicle broke down due to problems…
-
Guest Ambassador Blog: What #MDAstrong Means to Me
Saida Mahoney is a college student from Oakland, CA, where she is majoring in performing arts. She is a dedicated advocate and activist for people living with disabilities. Saida enjoys traveling and giving back to others through community service. She lives with congenital muscular dystrophy, which has affected her ability to participate fully in school…
-
I’m living my best life, with or without Duchenne MD
In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight,…
-
The life with Duchenne muscular dystrophy no one said I could live
In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight,…
-
Duchenne on the World Stage: World Duchenne Awareness Day at the United Nations
On Friday, September 5th, 2025 I had the honor of speaking at the United Nations to raise awareness and turn hope into action for World Duchenne Awareness Day. The Permanent Representative of the State of Kuwait to the United Nations, Ambassador Tareq Albanai, hosted the meeting. Ambassador Albanai’s son lives with Duchenne, and he and…
-
Community Voices: Disability Is Not a Disappearing Act
Chase the Entertainer “My name is Chase the Entertainer. I’m a mentally ill, physically disabled, Native American, professional magician, and I only look like one of those things.” This is how I open every show. It gets a laugh, which is good, because I need that laugh. Not just because it loosens the room, but…
-
My son’s pneumonia reminds me I still don’t know what I don’t know
I expected today, as this column is published, to be long and exhausting. I’d been scheduled to drive to my central Nebraska home from Denver, then help the marching band perform at halftime of the high school football game. I’m a mom to seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14;…
-
Avidity reports multiple functional improvements with Del-zota for individuals with Duchenne amenable to skipping exon 44
As an early investor in Avidity Biosciences, we are pleased to share their exciting news that skipping exon 44 in the dystrophin gene with Del-zota was associated with functional improvements in multiple measures after one year of treatment. Previously, Avidity reported topline data from their Phase 1/2 EXPLORE44 clinical study demonstrating a significant increase in…
-
Long-term Duvyzat helps maintain motor skills in Duchenne MD
Long-term treatment with Duvyzat (givinostat) delays the loss of key motor skills in people with Duchenne muscular dystrophy (DMD), published results from an open-label extension study show. “The sustained benefit observed across functional outcomes reinforces the potential of Duvyzat to meaningfully alter the course of the disease,” Scott Baver, PhD, head of U.S. medical affairs…
