Results from an MDA-supported multicenter phase 1b clinical trial have shown that treatment with pyrimethamine was safe and well-tolerated and associated with reduced levels of SOD1 protein in people with ALS caused by a mutation in the gene for SOD1.Pyrimethamine is a small molecule approved by the U.S. Food and Drug Administration for treatment in humans of the parasitic infections malaria and toxoplasmosis.
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This summer, MDA launched a new campaign called Live Unlimited that was inspired by the stories of individuals and families we serve. Together with our MDA community, we’ve challenged Americans to defy their limits — those we sometimes place on ourselves and those defined by others — and live life to the fullest.
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After listening to inspiring individuals with neuromuscular diseases and their families, the Muscular Dystrophy Association (MDA) launched a revitalized brand and new look for Quest Magazine in January 2016. We'd like to know what families think of Quest. Please take a few minutes to fill out the Quest Reader Survey and provide your feedback so we can continue to improve the information and resources we share in each issue.
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MDA families face daily challenges that often make walking, playing, running, getting dressed, hugging and talking difficult — sometimes seemingly impossible. But these courageous families are defying their limits every day and inspiring a nation to do the same.For example, Davion Bartlett was diagnosed with Duchenne muscular dystrophy when he was 4 years old. He quickly learned as a young child that his disease would never define him or hold him back.
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The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair.
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As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.
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Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.
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Editor’s note: Read about Colleen Nichols’ experience of having a baby with a little help from technology in Love, Marriage, Science and a Baby Carriage. A college friend recently had her first baby, and after exchanging a few texts, I was reminded that there is a bit of new mom advice that every first-timer needs to hear. The days are long, and when you're unsure of what you're doing and experiencing, it's helpful to know that you're not the only one who thinks motherhood is hard.
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To be honest, before the 2016 MDA Wichita Muscle Walk, I’d only donated to an organization seeking to find a cure for muscular dystrophy once. I’d grown up as the older sister of a wonderful, unique brother with congenital myotonic muscular dystrophy. Dustin was born when I was three, and I thought that he was just the way he was meant to be, and that I was lucky to have the brother I did.
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I am a statistic. In 2012, at 57 years of age, after almost two years of worsening symptoms, I was diagnosed with ALS. Being a white male at my age, in many ways I was the “typical” ALS patient. Of course with a disease like ALS, there really is no such thing as a typical case. Each of us is unique, each of us is different. This disease attacks men and women, young and old, of every race and religion. This disease attacks rich and poor alike. And yet it is a rare disease, so rare as to be deemed “orphaned,” at least until the Ice Bucket Challenge.
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