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May 2012In This Issue: MDA NEWSMay is ALS Awareness MonthDistance swimming for ALS MDA 2012 Clinical Conference provided updates from top experts Dr. Howell receives lifetime achievement award Christie comes back for more RESEARCH NEWSHeat shock proteins provide new approach to DMD treatmentSMA disease course may be affected by ZPR1 Repligen launches Italian trial of experimental drug for FA Mitochondrial dysfunction may play a role in some forms of ALS Feedback Privacy Policy Previous Issues: March 2012 December 2011 November 2011 August 2011 Pass it along! Feel free to send your friends a link to this MDA e-update. 
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Welcome to the MDA e-update, the Muscular Dystrophy Association's online newsletter that reports MDA's research breakthroughs and other information to friends whose support helps make our programs possible. MDA NEWSMay is ALS Awareness MonthWhat do these three people have in common: Former Boy Scout leader Ben Thomas; Brian Carless, a local radio and television regular who loves baseball and photography; and Robin Mower, a Special Olympics powerlifting coach and fitness coach?
Beginning May 1, be sure to visit mda.org each day to meet 31 inspiring individuals — one per day — who are living with ALS. In addition to the profiles, a section called "ALS: It's My Story, Too" provides a forum where family and friends can describe how ALS impacts their lives. Other MDA ALS events scheduled across the country during May include educational programs, support group presentations and fundraisers. This is the 21st year that MDA has conducted special activities in conjunction with ALS Awareness Month, in an effort to build awareness of this rare and devastating disease, and support for finding a cure.  Distance swimming for ALSSpaniard Jaime Caballero joined an elite list of long-distance swimmers in April after swimming from Catalina Island to Palos Verdes, Calif. It helped him reach two goals: He became a rare member of the Triple Crown of Open Water Swimming, and he helped raise money for ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) research.
He raised $100,000, a portion of which will go to MDA's Augie's Quest ALS research initiative. "My reason for doing this is to raise money to find a cure for ALS," he said. "Many of us, including me, have lost family members to this disease." Caballero's uncle passed away in 2009 from ALS. Since 2011, Caballero has raised nearly $150,000 for ALS research through sponsors, contributions and swimming events. MDA 2012 Clinical Conference provided updates from top expertsThe latest advances in diagnosis, medical management and emerging therapies for neuromuscular diseases were presented to more than 500 attendees at the 2012 MDA Clinical Conference in March.
About half the conference participants were physicians from such specialties as neurology, physical medicine and rehabilitation, cardiology and pulmonology. Other participants included nurses, nurse practitioners, therapists, genetic counselors, social workers and MDA health care service coordinators. Four daily blogs, including two from individuals with neuromuscular diseases, provided an overview and "human perspective" on the conference proceedings. Dr. Howell receives lifetime achievement awardR. Rodney Howell, M.D., renowned pediatrician and geneticist, and current chairman of the Board of Directors for the Muscular Dystrophy Association, received a special award in April: the 2012 American College of Medical Genetics (ACMG) Foundation Lifetime Achievement Award.
A lifelong advocate for children, Howell has been a strong voice for newborn screening since the 1960s, serving on numerous high-level governmental committees over the years. His leadership is part of the reason why, today, nearly 95 percent of the 4.1 million children born in the U.S. each year are screened for some 30 genetic disorders. "We're proud of Dr. Howell and this well-deserved honor," said MDA Medical Director and Interim President Valerie Cwik, M.D., noting that his guidance and expertise are "invaluable as we explore the potential for early detection and early treatment of neuromuscular diseases." Howell has been a member of the MDA board since 1994, and also has served as chair of the MDA Scientific Advisory Committee. "Dr. Howell is outstanding at what he does," said Cwik. "The MDA family is truly fortunate to have him." Christie comes back for moreIn recognition of his stellar ability to excite teenagers and young adults about MDA's lifesaving mission, Luke Christie has been named to a fourth term as the Muscular Dystrophy Association's National Youth Chairman.
"I'm always grateful for the opportunity to share MDA's story with teens and young adults," said Christie, 18, who is a freshman communications major at Furman University in Greenville, S.C. "Through my experience in living with a muscle disease, I feel that I can have an impact on my generation; I'm always approached by students wanting to know how to help." Christie has spinal muscular atrophy, a progressive neuromuscular disease that causes muscle weakness and atrophy. The former MDA National Goodwill Ambassador (2006 and 2007) relies on a power wheelchair for mobility.   RESEARCH NEWSHeat shock proteins provide new approach to DMD treatment
SMA disease course may be affected by ZPR1
Repligen launches Italian trial of experimental drug for FA
Mitochondrial dysfunction may play a role in some forms of ALS
FeedbackFeedback about this newsletter is welcome. General correspondence may be addressed to mda@helpmda.org.Privacy PolicyInformation in the MDA website is for educational purposes only, and is not intended to replace, and should not be interpreted or relied upon as, professional advice. By accessing the MDA website, you agree to the terms and conditions contained in its disclaimers. Please read MDA's Terms of Use and Privacy Policy.What's New | Diseases | Research | Clinics & Services | Spokespeople | Publications | How to Help | Search | Help Now | Home     We appreciate your support and respect your privacy, so we'll only send these email updates with your approval. If you don't wish to receive future email communications from MDA, click here to unsubscribe from receiving email. 3300 E. Sunrise Drive Tucson, AZ 85718 |
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