Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
The Muscular Dystrophy Association (MDA) announced last week it had selected former MDA vice chairman of the board Donald Wood, PhD, as the new president and CEO of the organization, taking over from Lynn O’Connor Vos. Wood most recently was the vice president of institutional…
If 2020 hasn’t been a challenging year for you, that’s great news. But for me, like many others, this year has been a lesson in overcoming adversity, whether it’s due to sheltering in place from COVID-19, losing a job, or facing a mental…
The Muscular Dystrophy Association Telethon returns this month after a six-year absence, with actor Kevin Hart hosting the virtual event. The two-hour MDA Kevin Hart Kids Telethon, set for Oct. 24 at 8 p.m. (ET), will stream live on the…
On Sept. 29, part of my life was lost. My dog, Gus, who had been a staple of the Miller family household for 13 years, left the world. To where, we can only guess, but he left parts of his odd personality with us and gave us memories we will…
As a journalist and person with Duchenne muscular dystrophy, I have a dual purpose. I want to inform people and hold those in power accountable. I also want to show that having a disability doesn’t detract from my career goals. U.S. National Disability Employment…
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they found out Levi has Jansen’s metaphyseal chondrodysplasia — an extremely rare form of dwarfism.  “The hardest…
Over the last couple of years, I’ve had opportunities to meet and befriend more adults with Duchenne muscular dystrophy. Whether we’ve found one another through CureDuchenne events or a common love for video games, my network within the…
As I’ve started relying more on people for things I used to do on my own, it’s become easier to ask for help without feeling like a burden. This toxic thought has been a challenging mental hurdle, but it’s one we all deserve to get over. With compassion,…
The world can be overwhelming thanks to the deadly coronavirus pandemic, especially for someone dealing with muscular dystrophy. On top of the daily struggles — lack of mobility, physical exhaustion, and steroid-related side effects — there’s also the worry of getting sick and feeling the virus’s financial…
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