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Recent Quest Articles

'I Can Eat That!' Cookbook for Easy Chewing and Swallowing

Have you ever considered whether you eat to live or live to eat?Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.

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FA: Idebenone Clinical Trials

Overall, idebenone has been shown to be safe and well-tolerated in a number of phase 1, 2 and 3 human clinical trials dating back to 1999. The most common side effects are mild to moderate gastrointestinal issues such as diarrhea, nausea and indigestion. Early trials at low doses first demonstrated the potential for idebenone to reduce FA-associated  cardiomyopathy  (heart muscle abnormality).

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Strategies to Improve FA-Affected Speech

Anne Wallace, speech-language pathologist and clinical associate professor in the Department of Communication Sciences & Disorders, University of Iowa in Iowa City, has been at that facility for 20 years. During that time, she’s had a long-standing relationship with the pediatric specialty clinics, including the MDA clinic directed by child neurologist Katherine Mathews, and has worked with many children and young adults with  Friedreich's ataxia (FA).

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Stand Up and Go with Mobile Standers and Standing Wheelchairs

Mobile standers and standing wheelchairs are for people who want to stand without having to stand still.Medical professionals agree that standing is good for the musculoskeletal system, and most experts recommend standing 30 to 60 minutes a day, depending on users’ level of tolerance. (Note: Always consult a doctor before starting a standing program.)

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Off-Road Trekking for Wheelchair Users

Full-time wheelchair users with a hankering to enjoy the great rugged outdoors may find that their standard chairs can’t always take them where they want to go. That’s where these specially designed conveyances can step up to the job.Even extreme locations like the climbers’ camp at the base of Mt. Everest have been reached and conquered by severely disabled people riding in these unusual-looking contraptions, which typically are pushed and/or pulled by friends and acquaintances affectionately known as “Sherpas.”

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Treating the FA-Affected Heart

R. Mark Payne, M.D., professor of pediatrics at Riley Heart Research Center, Indiana University, is a pediatric cardiologist whose medical specialty is intervention in children with heart disease, and who conducts research on heart disease due to mitochondrial defects. In  Friedreich’s ataxia (FA), heart problems are related to a deficiency of the  frataxin  protein, which is normally located in the mitochondria.

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In Focus: Friedreich's Ataxia

Friedreich’s ataxia (FA)  is an inherited neurodegenerative disease affecting approximately one in every 50,000 people in the United States.First described by German physician Nikolaus Friedreich in 1863, FA mainly affects the heart and nerve cells of the brain and spinal cord, as well as the peripheral nerves.

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DMD Progression Studied in Very Young and Nonwalkers

Update (Jan. 23, 2013):  As of early 2013, MDA's DMD Clinical Research Network includes these five sites: University of California, Davis (UC Davis); Nemours Children's Hospital in Orlando, Fla.; Washington University in St. Louis; Nationwide Children’s Hospital in Columbus, Ohio; and Children's Medical Center in Dallas. See  Help Today, Help Tomorrow is Goal of MDA's Duchenne Clinical Research Network  to learn more.

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Viagra May be Heart Helper in DMD

Results from a recent study have shown that treatment with the drug sildenafil (brand name Viagra) conferred both long-term protection against cardiac (heart) dysfunction in younger mice, and rapid reversal of heart damage in aged mice with a disease resembling  Duchenne muscular dystrophy  (DMD).Cardiac disease in individuals with DMD or  Becker muscular dystrophy  (BMD) manifests most often as cardiomyopathy (heart-muscle weakness) or as an irregular heartbeat known as cardiac arrhythmia. The condition, often developing in childhood and the early teens in individuals with BMD or DMD, can result in congestive heart failure.

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New Apprenticeship Program for Personal Care Attendants

A new training opportunity, the Direct Support Professional Registered Apprenticeship Program, will assist direct support professionals (such as hired caregivers and aides) in advancing in this essential field, say the program’s creators, the National Alliance for Direct Support Professionals (NADSP) and the American Network of Community Options and Resources (ANCOR).

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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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