-
Perseverance fuels one college grad with Duchenne seeking a job
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…
-
Mentally preparing for the day I can’t play piano because of FSHD
My regular readers know that I love to play music. I’ve been performing nearly my entire life. Music began for me when I was 5 years old. My dad taught my brother, Tim, and me to play guitar and banjo. These were the right instruments for Tim, who is an incredibly talented musician who also…
-
Catch up on the 31st Congress of the World Muscle Society
Each year, the World Muscle Society (WMS) Annual Congress brings together the best minds in neuromuscular research, clinical care, patient advocacy, and industry. The meeting offers a dynamic platform for sharing new data, fostering collaborations, and advancing the science behind therapies for diseases like Duchenne and Becker muscular dystrophy. This year’s event in Hiroshima, Japan,…
-
From survival to hope: My son’s story with gene therapy for Duchenne MD
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…
-
MDA Engage: Patients belong at the start of drug development
People living with neuromuscular diseases and their families should help shape new treatments from the very start, rather than weighing in only after key decisions are made, according to experts and community members who spoke on a Sept. 26 panel at the MDA Engage: Chicago symposium. The panel, “Building Better Treatments Together,” focused on how…
-
Secretome Therapeutics has initiated an open label phase 2 study to evaluate the safety and potential skeletal muscle and cardiac effects
Secretome Therapeutics has initiated an open label phase 2 study to evaluate the safety and potential skeletal muscle and cardiac effects of STM-01, an investigational cell therapy derived from cardiac progenitor cells. These cells produce several biological factors that may help regulate inflammation, fibrosis, and tissue repair for DMD. Read the press release HERE Letter to the community:…
-
How an Ohio State grad finds purpose living life with Duchenne MD
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…
-
Simply Stated: Updates in Paramyotonia Congenita
Paramyotonia congenita (also known as Von Eulenberg disease) is a rare inherited disorder that causes episodes of muscle weakness, stiffness, or paralysis (inability to move). These episodes typically affect the face, neck and upper extremities, and can last from minutes up to hours. They are often triggered or exacerbated by cold temperatures or repeated muscle…
-
Duchenne advocate uses his podcast to go beyond the disability community
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…
-
I’ve found DMD siblings to be caring and wise beyond their years
I share seven children with my husband, Jason, including three sons who have Duchenne muscular dystrophy (DMD): Max, 20, Rowen, 17, and Charlie, 15. Most of my columns talk about caregiving and my sons with DMD. However, in our large family, many other dynamics are at play, including the sibling dynamic. This week, I want…
