Latest Editions
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Quest Issue 3, 2019 -
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2019 Conference Edition -
Quest Issue 1, 2019
Recent Quest Articles
A Strong Tradition
Like many kids, Vince Van Binsbergen, 26, wanted to be a fire fighter when he grew up. “I used to run around with a fake EMT bag,” says the California native, laughing.Van Binsbergen never outgrew that dream, and at age 15, he enrolled in a fire explorer program, where he learned what being a fire fighter is all about. After high school, he moved to Colorado and served as a volunteer fire fighter for the Elk Creek fire department while working as an EMT. After about three years, a paid position opened up, and he’s been working for the Elk Creek Fire Department Local 4710 ever since.
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CITGO Gives Back
At the 2017 MDA Scientific Conference in Arlington, Va., on March 20, MDA presented CITGO Petroleum Corporation Assistant Vice President of Supply and Marketing Alan Flagg with a special research award to honor CITGO’s unprecedented contribution to MDA’s research program over the years. In the past 30 years, CITGO has donated more than $200 million to MDA to support the search for new treatments and cures for neuromuscular diseases.
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Surviving and Thriving in College
College is a blast, but it can come with a pile of challenges the size of a mountain. Just look at the hundreds of articles there are advising students on how to conquer stress, manage time and deal with that one professor who may as well have been stripped from an ‘80s movie. College can be the best — and the most draining — time in a person’s life.
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Running the Country
MDA Team Momentum participates in a dozen (and counting) marathon and half-marathon events every year. These events feature hundreds of runners and walkers who raise money for MDA, and they take place all across the United States, from San Diego to Chicago to Boston.Here are some of the groups of runners who have made an impact fundraising for and raising awareness of MDA.
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Progress Now Summer 2017
The U.S. Food and Drug Administration (FDA) in May approved edaravone (brand name Radicava) to treat ALS. Under development by Mitsubishi Tanabe Pharma America, Radicava is the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years.Radicava is thought to work by relieving the effects of oxidative stress, which has been suspected to play a role in the death of nerve cells called motor neurons in people with ALS. (Oxidative stress is an imbalance between the production of free radicals and the ability of the body to counteract or detoxify their harmful effects with antioxidants.) Targeting this pathway could potentially preserve motor neuron health, which could in turn keep muscles functional for a longer period of time.
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Sparking the Live Unlimited Spirit
At MDA, we believe our limits do not define us. Limits are meant to be overcome. Turning perceived limits into unlimited opportunities means different things to all of us. For some, living unlimited means taking on an extraordinary challenge, like summiting a mountain or skydiving. For others, it means making a new friend, going to college or pursuing a career goal. What these moments have in common is a sense of confidence and a willingness to live beyond what some may see as physical or societal limits created by living with a neuromuscular disease.
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Mobility: Choose the Right Wheels
Purchasing a vehicle can be a daunting experience for many people. Choosing one that accommodates an individual who uses a wheelchair often presents an additional layer of decision-making. When you are ready to buy an accessible vehicle, be prepared to ask and answer a lot of questions. The process typically begins with an evaluation by a certified driver rehabilitation specialist (CDRS). A CDRS conducts an assessment of your abilities and limitations, provides driving instruction and can collaborate with a mobility dealer to determine which vehicle and equipment is the best fit.
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Sharing, Learning and Discovery
While it’s easy to understand how funding research and providing care for kids and adults from day one help individuals with neuromuscular diseases live longer and grow stronger, hosting conferences and facilitating dialogue also have tremendous benefits for saving and improving lives.MDA-supported conferences bring together the world’s best researchers, top clinicians, industry leaders, other stakeholders and families to share knowledge, ideas and best practices; to foster collaboration; to strategize around advocacy initiatives and to connect with like-minded individuals. These experts and influencers in the muscular dystrophy community come together with one goal in mind: to accelerate progress for our families.
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In Case of Emergency
Emergency situations present real challenges for individuals affected by neuromuscular diseases. For example, in February, when the Oroville Dam threatened to fail in California, downstream residents were given just one hour to leave their homes. Local news reported that a resident with a disability was left behind for hours due to lack of accessible transportation.
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Mobility: In the Driver’s Seat
Like many teenagers, Casey Stark wanted to learn to drive when she turned 16. But living with spinal muscular atrophy (SMA) and using a power wheelchair meant that preparing for and completing a driving test required extra planning.Stark, who was a high-performing high school student, knew she could pass a written test, but she wondered how she was going to get behind the wheel. The cost of adapting a vehicle with hand controls and other driving aids was prohibitive, and she didn’t need to drive to manage her day-to-day student activities, so Stark put that dream on hold.
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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 services are only available in the U.S.
