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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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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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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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Journeys of a Lifetime
Carden Wyckoff, a 24-year-old professional with facioscapulohumeral muscular dystrophy (FSHD), went on her first piggyback adventure in 2015 when her brother Spencer carried her on his back through the Reebok Spartan Sprint, a tough three-mile obstacle course. After their second Spartan race in 2016 — and after Spencer appeared on national TV on “American Ninja Warrior” — Carden and Spencer were approached by a friend who had co-founded the travel company Vestigo.
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Always Up for a Challenge
Nine-year-old Lily Sander doesn’t remember life without Charcot-Marie-Tooth disease (CMT), but she has never let it hold her back. After undergoing major foot surgery three and a half years ago to correct the extreme curving of both feet caused by CMT, Lily had to learn how to walk again. She now walks with the help of leg braces and has been thriving.
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Impacted by Friedreich’s Ataxia? Share Your Voice!
An upcoming Friedreich’s ataxia (FA) Patient-Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA) is your opportunity to tell the FDA and drug developers about challenges and burdens you have experienced with FA, and share your thoughts about what is most important to you in evaluating potential new treatments for the disease.
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.
