While it’s easy to understand how funding research and providing care for kids and adults from day one help individuals with neuromuscular diseases live longer and grow stronger, hosting conferences and facilitating dialogue also have tremendous benefits for saving and improving lives.MDA-supported conferences bring together the world’s best researchers, top clinicians, industry leaders, other stakeholders and families to share knowledge, ideas and best practices; to foster collaboration; to strategize around advocacy initiatives and to connect with like-minded individuals. These experts and influencers in the muscular dystrophy community come together with one goal in mind: to accelerate progress for our families.
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When Valerie Robinson came home from her first visit to her MDA Care Center in Texas after her son, Ryan, had been diagnosed with limb-girdle muscular dystrophy (LGMD) at age 14, the first thing she did was go to the MDA website and set up her MDA Muscle Walk team. “The clinic was an amazing experience, despite what we were there for,” she says. “At the end of the appointment, the MDA coordinator mentioned the upcoming Muscle Walk and asked if we would be interested in forming a team, and we just said, ‘Yes.’”
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Like many kids, Vince Van Binsbergen, 26, wanted to be a fire fighter when he grew up. “I used to run around with a fake EMT bag,” says the California native, laughing.Van Binsbergen never outgrew that dream, and at age 15, he enrolled in a fire explorer program, where he learned what being a fire fighter is all about. After high school, he moved to Colorado and served as a volunteer fire fighter for the Elk Creek fire department while working as an EMT. After about three years, a paid position opened up, and he’s been working for the Elk Creek Fire Department Local 4710 ever since.
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At the 2017 MDA Scientific Conference in Arlington, Va., on March 20, MDA presented CITGO Petroleum Corporation Assistant Vice President of Supply and Marketing Alan Flagg with a special research award to honor CITGO’s unprecedented contribution to MDA’s research program over the years. In the past 30 years, CITGO has donated more than $200 million to MDA to support the search for new treatments and cures for neuromuscular diseases.
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MDA Team Momentum participates in a dozen (and counting) marathon and half-marathon events every year. These events feature hundreds of runners and walkers who raise money for MDA, and they take place all across the United States, from San Diego to Chicago to Boston.Here are some of the groups of runners who have made an impact fundraising for and raising awareness of MDA.
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The U.S. Food and Drug Administration (FDA) in May approved edaravone (brand name Radicava) to treat ALS. Under development by Mitsubishi Tanabe Pharma America, Radicava is the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years.Radicava is thought to work by relieving the effects of oxidative stress, which has been suspected to play a role in the death of nerve cells called motor neurons in people with ALS. (Oxidative stress is an imbalance between the production of free radicals and the ability of the body to counteract or detoxify their harmful effects with antioxidants.) Targeting this pathway could potentially preserve motor neuron health, which could in turn keep muscles functional for a longer period of time.
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This is a busy and productive time for MDA and the families we serve. The unprecedented approval of three new drugs in six months to treat diseases in our program — after many years of investments with no new drugs — is proof that this is a time of great momentum in neuromuscular research. At MDA, we’re building on this progress as we push to do more to help families like yours in hometowns across America. As proof of our commitment to keep you at the heart of everything we do, here are some updates on new initiatives we’re developing for you and your family:
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Researchers are looking for 220 people with ALS and 30 people who do not have ALS from around the country to participate in the ALS AT HOME (ALS Testing through Home-Based Outcome Measures) study. The aim of the study is to assess whether ALS patients can reliably measure disease progression from home, with the goal of changing the way clinical trials for ALS are performed. The hope is to be able to reduce the number of patients that have to be enrolled in a trial in order to reduce the length of the testing process. In addition, if the study shows that individuals with ALS are able to reliably measure their disease at home, future trials could be designed to include patients who do not live near a study center.
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What are the effects of steroids on muscle repair in patients with Duchenne muscular dystrophy (DMD)? How can gene therapy impact people with Charcot-Marie-Tooth disease (CMT)? Will identifying biomarkers cut down on the need for muscle biopsies for those with myotonic dystrophy (DM)?These are some of the pressing questions researchers in the neuromuscular disease field are asking — and MDA is providing support to help them find answers. Our latest efforts include the award of 29 new research and development grants to support scientists working to bring treatments and cures to MDA families.
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Editor's note: It's with a heavy heart that we at MDA mourn the loss of Rebecca "Becky" Fulcher, who is featured in this article. Becky, who lived with Friedreich’s ataxia and was actively involved with MDA, passed away on April 5, 2017, in an automobile accident on her way home from a concert with family members and friends. Our sincerest condolences are with Becky’s family and friends during this enormously painful time.
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