-
Seeing ‘Les Misérables’ reminds me of the arc of my own life with DMD
Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“ is about second chances, justice, love, and…
-
‘Be Their Muscle’ MDA campaign marks 10 years of workouts, fundraising
The Muscular Dystrophy Association (MDA) and Burn Boot Camp, partnering once again for the 10th annual Be Their Muscle campaign, are calling on everyone across the U.S. to join a workout and help raise awareness and funding to support the neuromuscular disease community. Throughout April, more than 400 Burn Boot Camp locations in 44 states will unite…
-
Ambassador Guest Blog: How I Use My Voice by Volunteering – and Why You Should Too
K.L. Cleeton is an entrepreneur, writer, and advocate living with Spinal Muscular Atrophy in rural Illinois. He writes about disability, identity, and the systems that shape how we live at KLCleeton.com. This February, I’ve been spending my Tuesday and Thursday evenings on a video conference with a group of young entrepreneurs and creatives through the…
-
How to combat social isolation while growing older with muscular dystrophy
As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation. When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive muscle weakness, and general fatigue, I decline…
-
5 ways your DMD care team can make treatment access easier
Getting Duchenne muscular dystrophy (DMD) treatments covered shouldn’t feel like a second job, but it often does. Between insurance denials, endless paperwork, and high medication costs, treatment barriers can pile up fast, making DMD treatment access more difficult. Your DMD care team does a lot behind the scenes and can help you navigate insurance and…
-
Making time for self-care is vital in DMD caregiving
I live in rural Nebraska with my husband, Jason, and seven children. Three of them — Max, 20, Rowen, 17, and Charlie, 15 — live with Duchenne muscular dystrophy (DMD), so I am a mom to many as well as a caregiver. At times, it feels like I’m giving everything I have to my family.…
-
MDA Ambassador Guest Blog: Rurally Complicated
Jenna Ryerson is a 26-year-old, Missouri-based writer and creative person with a passion for exploring both the practical and the mystical sides of life. With Midwest roots and a naturally curious spirit, she blends grounded insight with intuitive reflection. Her interests range from holistic wellness and natural remedies to symbolism, astrology, and personal growth. Jenna…
-
Agamree could reverse growth stunting in boys with Duchenne
Boys with Duchenne muscular dystrophy (DMD) may be able to regain lost height and overcome growth stunting by switching from traditional steroids to the newer medication Agamree (vamorolone), a new study suggests. While standard corticosteroids are essential for managing DMD-related inflammation, they are known to halt bone growth in children. According to researchers, these new data…
-
Ataluren Update for the Duchenne Community
PTC Therapeutics provided an update to the Duchenne community with additional details following the withdrawal of the ataluren New Drug Application (NDA). The update notes that a limited remaining supply of Ataluren is still available, anticipated to last up to six months for individuals currently receiving treatment, and provides details for treating physicians to continue…
