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Recent Quest Articles

Demystifying Drug Prices

Back in December 2016, when the US Food and Drug Administration (FDA) approved Spinraza — an intravenous therapy developed by Biogen to treat all types of spinal muscular atrophy (SMA) — parents, patient advocates, and even industry observers were shocked at its price: $750,000 for the first year, then $375,000 every year after, for the rest of a patient's life.

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Claiming My Courage

There are few specific dates that stick in my memory. Sept. 21, 2016, is one of them. On that day, a phone call changed my family's lives forever. After two long years of visits with specialists and countless tests, there was finally a diagnosis for my 4-year-old son: centronuclear myopathy. In addition, his diagnosis was my diagnosis; he had inherited the mutation from me.

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Making Peace

A common but rarely spoken truth within the neuromuscular disease community is that it is a continuous battle to deal with the emotional repercussions of watching the mobility you have dwindling, before your very eyes, as your disease progresses along its fated course.For the first 15 years of my life, my strength was consistent. But my doctors had always warned me that spinal muscular atrophy (SMA) would dictate how my muscles deteriorated and that it would occur in stages. Once the deterioration began, it would enact a progressive downhill slope.

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Keeping a Sense of Humor

Many years ago, I helped my grandmother, then in her 90s, downsize from her apartment to a single room in an assisted-living wing. Surveying the brimming room, I tried to say something encouraging: "Grandmom, it's like you're going back to college." Her response surprised me. "Actually," she said, "I like to think of it as finishing school." Dark humor indeed. I like to believe I've inherited her remarkable sense of humor (and verbal cleverness).

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Embrace Your Body

When MDA National Ambassador Keisha Greaves was diagnosed with limb-girdle muscular dystrophy (LGMD) as a college student at Framingham State University, in Massachusetts, her lifelong confidence in her body plummeted.Studying fashion design and merchandising made the situation especially tough. She was used to looking a certain way and following fashion trends that certainly didn't celebrate different kinds of bodies. At first, she didn't want to share what was happening — for example, she told people she was walking with a cane because of a sprained ankle. It wasn't until nearly four years after her diagnosis that she decided to acknowledge her condition publicly.

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MDA Q&A: Let's Talk

The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ questions. Q: How can I find a therapist who knows about mental health and living with neuromuscular disease? —Jeffrey, New York First, we applaud you for prioritizing your mental health. Because neuromuscular diseases are considered rare, it might be difficult to find a mental health professional who is familiar with a specific disease. We recommend looking for a therapist who has worked with people living with chronic health conditions. Consider asking if they are also willing to counsel your family members, as a neuromuscular disease can also affect loved ones in their own ways.

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The Latest on Mitochondrial DNA Depletion/Deletion Syndrome

Mitochondrial DNA (mtDNA) depletion/deletion syndrome (MDDS) is a group of genetic diseases in which the mtDNA inside cells cannot replicate correctly. Mitochondria are the powerhouses of cells, generating more than 90% of the energy in our cells. With fewer functioning mtDNA, cells fail to generate enough energy to function properly.

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Mental Health Is for Everyone

How are you? We're asked this question frequently, and we often respond, "Fine." But the truth is, many times we're not fine. Life is complicated. And for people living with a neuromuscular disease or caring for a loved one who is, there are a multitude of challenges to navigate.Having a lot to deal with, feeling alone, and coping with medical trauma and loss are among the many life experiences that can affect mental health. It's important to know that no matter what you're feeling, you don't have to go through it alone.

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2021 Reader Photo Contest Winners

Congratulations to 2021 Lasting Impression Photo Contest winner Leslie Crowley Jr., 27, of Atlanta, Georgia.This photo shows Leslie, a former MDA Summer Camper who lives with Duchenne muscular dystrophy (DMD), in his natural element, with his music equipment behind him in his home studio. A lifelong music lover, Leslie produces music under the name J0K3 (find him on social media @jokemusic3).

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STEM Connections

As part of MDA's STEM (science, technology, engineering, and math) Connections program, MDA representatives sat down with experts from General Motors (GM) in July 2021 to discuss STEM education and careers.The panel was co-moderated by MDA Ambassadors Justin Moy and Amanda Zurek, both of whom are pursuing careers in STEM-based fields, and it featured engineers, designers, and innovators from GM. Together, they discussed their experiences with STEM careers, how they are working to improve accessibility and address sustainability, and the importance of encouraging youth of all abilities and backgrounds to enter STEM-based fields.

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MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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