Recent Quest Articles
The Great Accessible Outdoors
Jessica Albanese, 20, is passionate about the outdoors. The Delaware native, who lives with limb-girdle muscular dystrophy (LGMD), has navigated several of our country’s natural wonders in her power wheelchair.“Traveling is a passion of mine,” Albanese says. “I’ve hiked in the Great Smoky Mountains, I’ve seen the wild ponies at Assateague Island, and I’ve visited the alligators at Everglades National Park.”
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Voice Banking Offers the Promise of a Natural Voice
A strong voice was the foundation of Penny Abreo’s job as a first-grade reading teacher in Houma, La. But when she heard her words slurring and experienced unexplained fatigue and hand cramps, she and her husband, Aaron, sought medical advice.At 41, Penny learned she had ALS. Also known as Lou Gehrig’s disease or motor neuron disease, ALS affects nerve cells in the brain and spinal cord that control voluntary muscle movement such as speaking, walking and other life functions. As the cells stop working, so do the muscles used to do such activities.
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Pushing the Limit
After running three marathons with MDA Team Momentum since 2014, Will Farr was ready for a bigger challenge. Farr had previously pushed his 14-year-old son, Owen, who has Duchenne muscular dystrophy (DMD), in a racing chair for a 4-mile race as part of a charitable initiative of the men’s workout group F3 Nation. In a video made to promote the initiative, Owen was asked if he thought his dad would push him in a marathon. Of course, Owen’s answer was “Yes,” and Farr decided to prove Owen right. In October, at the 2017 Marine Corps Mara-thon in Washington, D.C., Farr pushed Owen for the entire 26.2-mile race.
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Walking Strong
For Rene Runions, a 19-year-old sophomore at Saint Louis University (SLU), MDA has been a part of her life since she was diagnosed with Charcot- Marie-Tooth disease (CMT) in the sixth grade. She started attending MDA Summer Camp in her home state of Illinois and later was named the Illinois State Ambassador.
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Designing Her Dreams
Allie Williams, a 25-year-old who lives with Charcot-Marie-Tooth (CMT) disease, earned her master’s degree in biomedical engineering from Texas A&M University in 2017. Williams always knew she wanted to help individuals with disabilities, but it wasn’t until her junior year of high school that she found the right fit.
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Productive Partnership
Since first partnering with MDA in 1985, Acosta, a full-service sales and marketing company focused on packaged consumer goods, has raised more than $82 million for MDA’s mission. Acosta’s staff support MDA through fundraising events, marketing promotions and even volunteering at MDA Summer Camps. Here are just some of the ways Acosta offices across the country have showed their support for MDA:
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The Power of Role Models
In recent months, I’ve experienced a noticeable decline in my arm and leg strength. My limbs feel heavy. It seems like they succumb a little bit more to gravity each day. One night, I tried to roll over in bed, and it took me six attempts — six! — to succeed. By the time I finally flipped over, I felt like I had just gone to the gym.
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A World of Opportunities
In 2010, Darrin Altman, diagnosed with ALS, faced a professional dilemma. His speech was failing, which threatened his career as a Spanish-language court interpreter. “My doctors at UCLA recommended an app to help me communicate, which worked OK, but not perfectly,” Altman recalls. After testing several alternatives, he decided that the solution was to create his own full-featured text-to-speech app, which he would offer to the world for free.
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A Word from President & CEO Lynn O’Connor Vos
Since joining MDA as president and CEO in October, I’ve had the sincere pleasure of spending time with and learning from our families, leading clinical experts, renowned researchers, dedicated sponsors, and passionate MDA staff and volunteers. The progress we’re making together is unprecedented, and I know it is only the tip of the iceberg. Working together, I see incredible opportunities to push the limits of neuromuscular disease research and provide an even better health care experience for individuals and their families.
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Progress Now Winter 2018
In November, MDA announced 13 new MDA research and development grants, with a total funding commitment of $3.5 million, that are now supporting research projects around the world. The new projects cover a broad range of diseases in MDA’s program and are intended to impact the greater neuromuscular disease landscape.
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