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Research Updates September-October 2007

Diseased featured in this article include:  Duchenne muscular dystrophy, Friedreich's ataxia and myotonic musuclar dystrophy.MDA-supported researchers at the University of Pennsylvania and the University of Ottawa report finding a molecule that keeps the muscle protein known as utrophin confined to one small area of a muscle fiber and thereby limits its potential as a therapy for  Duchenne muscular dystrophy  (DMD). Releasing this brake by blocking this molecule could become a strategy for treating the disease.

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Taking a Closer Look at Myotubular Myopathy

When Patrick and Sarah Foye of Pine Brook, N.J., had their baby boy, Adam, in 2001, there was little reason to believe at first that anything was wrong. "Adam had a normal birth," Sarah says, but things didn't go as well as expected in the months that followed.Patrick is a physician specializing in rehabilitation, and Sarah is an occupational therapist, so they were quick to note that something wasn’t right, even though Adam was their first child.

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Simple and Safe

Editor’s note: In the last issue of Quest, Diane Huberty told readers why she was happy with getting her breathing assistance (ventilation) through a tracheostomy tube with a volume ventilator (see  “Truth, Lies and Tracheostomies,”  July-August 2007). In the following article, Michael Munn tells readers why he prefers having a mask or mouthpiece with the same type of ventilator.

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Fair Housing

When three friends decided to move from the dorms at the University of Wisconsin-Whitewater into an apartment, they knew they might encounter a few challenges: The just-right place they sought had to accommodate three tenants with neuromuscular disease.“We needed space for not just one, but three, power wheelchairs,” explained Michael Chaloupka, 21, who has spinal muscular atrophy type 2. He and his roommates, Matt Strzyzewski, who has Duchenne muscular dystrophy, and Lauren Oftedahl, SMA2, went into the search with a positive attitude because they knew other university students with disabilities who were living in apartments in Whitewater.

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The Pain and Promise of Prenatal and Newborn Genetic Diagnosis

Our son is wonderful,” says K.M., a 42-year-old San Francisco area events manager and the mother of a 7-year-old boy with  Duchenne muscular dystrophy. “I couldn’t ask for anything more. He’s everything I ever wanted. Of course I wouldn’t want this disease, but he’s just such a great, sweet kid, and it’s been our hope and dream to give him brothers or sisters.

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Truth, Lies and Tracheostomies

When neuromuscular disease weakens the muscles used for breathing, many people benefit greatly from noninvasive ventilation (NIV), which can add years of breathing support.But when a tracheostomy and ventilator are suggested for better breathing, some people see NIV as “enough” and a trach and vent as somehow “too much.”

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Not Always Smooth Sailing

"Since being on prednisone, I’ve been up and down with my weight and up and down with the milligram dosage,” says Carlie Brinker. “I’m 19, and I’ve been on prednisone for 11 years.”Prednisone is a  corticosteroid  that’s commonly prescribed for inflammatory conditions, such as the  dermatomyositis  that Brinker has. Although potent and effective at quelling an unwanted immune response, particularly when inflammation is involved, the medication is well known for its side effects (so much so that  Coping with Prednisone,  by Eugenia Zukerman and Julie Ingelfinger, published in 1997 by St. Martin’s Press, remains popular for those taking the drug).

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What Does Blocking Myostatin Do?

Blocking the protein known as myostatin, which limits muscle growth, has been under intense investigation as a strategy for the  muscular dystrophies  since 2002, when scientists found that mice with  Duchenne muscular dystrophy (DMD)  that were bred without myostatin were stronger and more muscular than their counterparts with normal myostatin levels.

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Nutritional Considerations While on Corticosteroids

Side effects of prednisone and other corticosteroids include increased appetite and weight gain, as well as osteoporosis (porous and weakened bones). Appropriate nutritional supplements while being treated with prednisone include calcium and Vitamin D.Weight gain is a side effect of prednisone regardless of how much a person eats. However, since many people on prednisone also have an increased appetite, they may gain additional weight from overeating. This weight gain may result in further difficulties with mobility.

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Is Your PCA Driving You Crazy?

Personal care attendants, personal assistants, attendant caregivers: Whatever you want to call them, we all know how important they are to our independence. Depending on somebody isn’t easy. Here are some ways to make the road smoother.For the relationship to be successful, both the personal care attendant (PCA) and the consumer need to understand their roles and what’s expected of them. When there’s miscommunication, trouble often follows.

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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.

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