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MDAS gala reminds me why I advocate for my community
On April 25, the Muscular Dystrophy Association (Singapore), or MDAS, celebrated its 25th anniversary with a spectacular gala at Marina Bay Sands, an iconic hotel and convention center here in Singapore. The evening was filled with music, memories, and meaningful reunions. The staff had adorned the room, which quickly filled with guests from various walks…
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FDA set to decide on deramiocel for DMD cardiomyopathy
The U.S. Food and Drug Administration (FDA) is on track to make a decision about deramiocel, an experimental cell therapy designed to treat heart disease in Duchenne muscular dystrophy (DMD), by the end of August. The FDA agreed this year to review an application to approve deramiocel for DMD cardiomyopathy, or disease of the heart…
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MDA Ambassador Guest Blog: Balancing Gracefully: A Mother’s Day Reflection from Ms. Wheelchair America
Tamara Blackwell is a faith-filled wife, mother, and advocate who empowers women to rise in purpose through God’s Word and personal testimony. As a leader and encourager, she speaks from the heart, calling others to embrace their divine purpose, overcome challenges with faith, and step confidently into the life God has destined for them. Tamara…
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In life with muscular dystrophy, it’s all about the planning
Living happily with limb-girdle muscular dystrophy, as I do, requires patience, a positive attitude, and a good support system of family, friends, and a professional care team. But I’ve learned there’s another huge component for me to succeed: planning. Abilities that able-bodied people take for granted often require well-thought-out steps for those of us using…
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I can’t keep up this exhausting pace as a mom, teacher, and caregiver
I am going at a pace I can’t maintain. As a former half-marathon runner, I can feel the burn in the pit of my stomach as I write this. I can feel the heat in my legs and cheeks as I push myself to the finish line. Except this time, I’m not running a race…
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Share your NOW: The impact of up-to-date data in The Duchenne Registry
The Duchenne Registry is designed as a longitudinal (long-term) research study, collecting information from the same people about the same topics over time. Data entered at one point in time is just that – a single snapshot of a person’s health experiences. Over time, a person’s experience can start to look a lot different than…
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Fire Fighters Go the Distance for MDA
Thomas Beers knew from a very young age that he wanted to be a fire fighter. The now 25-year-old Montana native developed an early admiration for the commitment of service that he saw exemplified by his local fire fighters. Fire fighters’ commitment, both to keeping their communities safe and to bolstering the mission and impact…
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Now measuring my life in pounds, ounces, minutes, and seconds
In a recent column, I talked about paring down my music rig and retiring my accordion. Over the years, I’ve transitioned from a 120-bass professional accordion to a 32-bass student model that, while less than 15 pounds, is now too heavy for me to handle. Because of my facioscapulohumeral muscular dystrophy (FSHD), my right bicep…
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MDA Ambassador Guest Blog: What I’ve Learned as a Disability and Wellbeing Researcher
Payton Rule is a Clinical Psychology PhD student at Washington University in St. Louis, where her research focuses on wellbeing among individuals with disabilities. She was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of five. In her free time, Payton enjoys playing wheelchair pickleball, spending time with friends and family, and exploring local parks…
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Myotonic dystrophy patients in US face higher healthcare costs: Study
People with myotonic dystrophy (DM) use more healthcare resources and face higher associated costs than patients without the disease, according to a U.S. study that analyzed a large database of insurance claims. After diagnosis, DM patients are more likely to be hospitalized and visit an emergency department, researchers found. Factors contributing to higher care costs…
