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Recent Quest Articles
FA: Everything is Treatable, Even if Not Yet Curable
Susan Perlman, M.D., director of the Ataxia Clinic, Department of Neurology, University of California-Los Angeles, is a neurologist who’s been doing research in, and taking care of individuals with, Friedreich’s ataxia (FA) for some 30 years. In November 2010, she talked with Margaret Wahl, MDA’s medical and science editor.
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FA: A Case of Impaired Ironworks
From childhood science classes, you may remember the periodic table listing all the known chemical elements. You might also recall, in approximately the center of the table, the symbol “Fe” signifying the metal iron.Produced inside large stars in distant space, iron is the most common element on Earth. From earliest times, humans have used it in everything from paint pigments, cookware and tools to buildings, bridges and cars.
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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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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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Floods, Emergency Prep and Me
Devastating. Humbling. Unifying. Frightening.Those are words that echoed through Nashville on the weekend of May 1, 2010, when the area was hit by a storm of Biblical proportions — a storm that would ultimately change the face of this beautiful city.Although I’ve written in the past about disaster preparation for Quest readers, there is nothing like firsthand experience. Here, then, is my story.
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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).
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.
