Latest Editions
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Quest Issue 2, 2022
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Quest Issue 1, 2022
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Quest Issue 4, 2021
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Quest Issue 3, 2021
Recent Quest Articles
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.
Read MoreMental 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.
Read MoreDemystifying 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.
Read MoreClaiming 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.
Read MoreMaking 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.
Read MoreKeeping 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).
Read More2021 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).
Read MoreSTEM 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.
Read MoreAddressing Vaccine Concerns
To avoid getting seriously sick from COVID-19, healthcare providers and public health experts recommend that everybody who is eligible receive the COVID-19 vaccine.Vaccines have been protecting Americans from dangerous contagious diseases for decades. Thanks to vaccines, polio and mumps are rare today, and smallpox has been eliminated. (To learn more about vaccine history and safety, read " Are Vaccines Safe?")
Read MoreAdvocating Against Ableism
When 19-year-old Jessica Hetzel was younger, she often felt unsettled by how others approached disability. Living with spinal muscular atrophy (SMA), she was aware of how people with disabilities were often segregated at school — put into special education rooms unnecessarily, for example — or spoken to as if they were tragic children or "in on the joke" about their conditions.
Read MoreMDA 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.