Recent Quest Articles
The FDA Approval Process: Can We Have This Drug Now?
To people faced with life-threatening diseases, the U.S. Food and Drug Administration (FDA) can seem like an indifferent obstacle, keeping them from treatments that would otherwise be available. But the reality is much more layered and complex.Here, MDA answers some frequently asked questions about how the FDA works to shed light on this topic.Read More
Giving Muscular Dystrophy the Boot
The year was 1954. Dwight D. Eisenhower called the White House home, a gallon of gas averaged 22 cents, and the TV show “Father Knows Best” kept Americans captivated with Hollywood’s version of the perfect family. But, as explained in a 1954 article published in The Press-Gazette (Hillsboro, Ohio), no one knew best when it came to treating the estimated 200,000 Americans diagnosed with a “strange ailment” called muscular dystrophy.Read More
Preventing and Dealing with Theft by Hired Caregivers
Without the help of my paid caregivers, I can’t get out of bed. I put my life in their hands every day, and that’s why it was such a slap in the face when one of my aides stole my work laptop.It’s been well-documented that individuals with disabilities are victimized by crime, including burglary/theft, at much higher rates than the rest of the population. In fact, we’re often targeted specifically because of our disabilities.Read More
CMT: To Exercise or Not to Exercise?
To exercise or not to exercise? I can almost hear the people reading this article screaming, “NOT!” Truthfully, until about a year ago, I would have been screaming NOT the loudest, the longest and with absolutely no hesitation. I have been affected by Charcot-Marie-Tooth disease (CMT) since birth. I have not known a single moment without dealing with CMT. Learning to walk as a toddler came later than most, and with many more falls. Riding a bicycle was out of the question for me because my balance was just nonexistent. Don’t get me wrong, not all people with CMT are unable to ride a bike. My sister and my daughter both ride a bicycle, and both have CMT.Read More
Correcting Dystrophin Genes
In 2001, Charles Gersbach began his graduate studies in biomedical engineering at the Georgia Institute of Technology in Atlanta, joining a center that was working on constructing semi-artificial muscle, bone and cartilage tissues.He was interested in constructing new materials and making tissue implants, but what intrigued him more were the genetic underpinnings of tissue growth and regeneration.Read More
What About Exercise with LGMD?
Katherine Mathews is a neurologist at the University of Iowa Hospitals & Clinics in Iowa City, where she co-directs the MDA clinic. She recently discussed exercise in limb-girdle muscular dystrophy (LGMD) with MDA medical and science editor Margaret Wahl. Q: Do the different types of limb-girdle muscular dystrophy have implications for what you tell people about their activities?Read More
In Focus: Limb-Girdle Muscular Dystrophy
Say “limb-girdle muscular dystrophy” to most people, and you’ll get a questioning look. They may wonder what kind of girdle is being talked about and how limbs fit into the picture.The name actually comes from an anatomical term describing the supporting structures of the shoulders and hips, including bones and muscles. Limb-girdle muscular dystrophy (LGMD) is a genetic disorder in which the muscles surrounding the hips and shoulders degenerate.Read More
SMA: Full Speed Ahead
August is often referred to as Spinal Muscular Atrophy (SMA) Awareness Month, but for MDA, work on finding treatments for this degenerative disease — and providing assistance to individuals and families affected by it — is a year-round event.Today, research aimed at slowing, stopping or even preventing spinal muscular atrophy (SMA) is advancing with more speed and greater momentum than ever before. Here’s a roundup of some of the exciting research MDA has supported in the fight against SMA.Read More
CMD: Aiming Simultaneously at Two Biological Targets
Researchers at Boston University, supported in part by MDA, say their experimental two-pronged strategy for merosin-deficient congenital muscular dystrophy (MDC1A) was highly successful in a mouse model of this disease and should be further investigated as a potential treatment approach for patients.Read More
Service Monkeys Lend a Helping Hand
A guy rolls into his kitchen with a monkey on his shoulder … No, it's not the beginning of a really bad joke but an everyday occurrence for Michael Townsend of Baltimore, who received his monkey helper, Kathy, in 2007 from Helping Hands: Monkey Helpers for the Disabled. Townsend, 45, who has Duchenne muscular dystrophy and uses a power wheelchair, is one of more than 160 people across the country who has received a monkey helper free of charge from Helping Hands.Read More
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