-
3 scientists honored for laying groundwork for DMD treatments
Note: This story was updated Sept. 10, 2025, to correct the secondary headline from Columbia University to the University of Iowa. Columbia University awarded the 2025 Louisa Gross Horwitz Prize to three scientists whose research has helped lay the groundwork to develop new treatments for Duchenne muscular dystrophy (DMD). This prize is given to scientists who…
-
Young adults with disabilities deserve housing to live with dignity
On Aug. 21, I wrote to my local newspaper here in Singapore about a gap in housing policy that affects younger adults with severe disabilities. I’m one of those younger adults: I’m 29 and have Duchenne muscular dystrophy, a progressive condition that leaves me fully dependent on caregivers and reliant on a BiPAP ventilator around…
-
Looking for solutions helps me overcome obstacles with Duchenne
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,…
-
MDA Ambassador Guest Blog: Life Lessons from My Service Dog (and Best Friend)
Lyza Weisman (23) was diagnosed at 13 months old with spinal muscular atrophy (SMA). She was raised in the deep mountains of Colorado before attending Loyola Marymount University in Los Angeles for her undergraduate degree. Lyza graduated in May 2024 and moved to Williamsburg, Virginia, where she is now a second-year student at William & Mary Law School. She loves…
-
Avidity Biosciences Announces Positive New Data from EXPLORE44® and EXPLORE44-OLE™ Phase 1/2 Studies
Today, Avidity Biosciences announced new data from its EXPLORE44® and EXPLORE44-OLE Phase 1/2 studies of del-zota in people living with Duchenne muscular dystrophy amenable to exon 44 skipping. Del-zota is designed to deliver phosphorodiamidate morpholino oligomers (PMOs) to skeletal muscle and heart tissue to specifically skip exon 44 of the dystrophin gene and enable production…
-
In life with FSHD, find as much joy and laughter as you can
My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a messy ordeal. I’m totally fatigued after a…
-
Many of us with DMD need greater access to personal finance tools
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 (DMD), written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag…
-
Chronic illness or not, we all need to support each other
I’ve written columns about community and connection. I chose these topics because they’re relevant not only to those of us with rare, chronic conditions, but to everyone. I write through the lens of living with limb-girdle muscular dystrophy, but I strive to connect to all of society. After all, we all face difficulties, and we…
-
In Case You Missed It…
Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…
-
I’m taking action while living with 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,…
