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October 2006
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Donate | About MDA 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 to make our programs possible. Telethon 2006: Back in Vegas & Breaking Records
MDA extends its sincerest gratitude to the millions of Americans whose contributions and pledges to the 41st annual Jerry Lewis MDA Labor Day Telethon in Las Vegas made it an astounding success. The Telethon, which returned to the “entertainment capital of the world” after 12 years in Hollywood, raised a record $61,013,855 to support MDA’s research, services and information programs. Highlights of MDA’s 2006 Telethon included:
Lewis Nominated for Congressional Gold Medal
Three U.S. senators have introduced a resolution to honor MDA National Chairman Jerry Lewis with the Congressional Gold Medal for his lifetime commitment to philanthropy and his contributions as an entertainer. The medal is the country’s highest civilian honor.
Michigan Man Receives Achievement Award
Matthew “Mo” Gerhardt of East Lansing, Mich., is a perfect example of what people with disabilities can achieve. He’s earned success in academics and athletics, and hopes his personal and professional experiences will encourage others to attain their goals. Gerhardt, who has limb-girdle MD, is an academic enrichment coordinator in the Office of Supportive Services at Michigan State University. MDA honored Gerhardt with its 2007 National Personal Achievement Award, which was announced nationally on the Labor Day Telethon. Time for Flu ShotsBecause influenza can be dangerous for people with neuromuscular diseases, MDA offers free flu shots every year to those it serves. Flu shots are available through local MDA clinics, or MDA will pay for a doctor to administer a shot.
MDA Annual Report OnlineMDA’s 2005-06 Annual Report is available at local MDA offices or online. The report pays tribute to Robert Ross, MDA’s longtime chief executive who died in June.
‘Wings’ Flies High in 2006The sixth annual MDA Wings Over Wall Street gala on Sept. 28 raised more than $1 million for MDA’s ALS research program.
Since 2001, the New York event has raised more than $6 million for MDA’s ALS Division, specifically for its ongoing research efforts at MDA/ALS Centers in New York and Baltimore. Massachusetts Woman Named Ms. Wheelchair America
Autumn Grant of Attleboro, Mass., was named Ms. Wheelchair America for 2007 at the national pageant in Little Rock, Ark., Aug. 5. Grant, 32, who has limb-girdle MD, will travel the country advocating for people with disabilities and educating the public about disability issues. She’s director of the Center for Academic Achievement at Stonehill College in Easton, Mass.
 RESEARCH NEWSLimb-Girdle MD Gene Therapy Trial to Begin in 2007A clinical trial to evaluate the safety of a gene transfer procedure for people with type 2D limb-girdle muscular dystrophy will begin in early 2007. LGMD2D is caused by a mutation in the gene for the alpha-sarcoglycan protein. The National Institutes of Health, MDA and Columbus (Ohio) Children’s Research Institute will oversee the three-month trial involving gene injections into a lower leg muscle. Physicians will evaluate the procedure’s safety, the amount of protein produced and changes in strength. Experimental Cancer Drug Improves Muscle Size, Strength in MD MiceLed by MDA grantee Pier Lorenzo Puri in Rome, researchers in the United States and Italy agree that histone deacetylase (HDAC) inhibitors, which are being studied for use against certain cancers, may prove effective in treating some muscular dystrophies. The compounds were tested in mice with Duchenne muscular dystrophy (DMD), where dystrophin is the missing protein, and in one type of limb-girdle muscular dystrophy (LGMD), where alpha-sarcoglycan is the missing protein. In both types of mice, daily injections increased muscle fiber size, and reduced scarring and signs of inflammation. Preclinical studies are in the works to determine the suitability of these treatments in humans. Compound Restores Frataxin Production in FA CellsInvestigators have identified a chemical compound that can restore levels of frataxin, the missing protein in people with Friedreich’s ataxia (FA). Supported by the Friedreich’s Ataxia Research Alliance (FARA), working closely with MDA, researchers tested histone deacetylase (HDAC) inhibitors. These compounds change the packaging of DNA, affecting protein production. When the HDAC inhibitor was applied to cells in the lab, it restored cells’ ability to read frataxin genes and produce the protein. MDA and FARA plan to move leading therapeutic approaches for the treatment of FA into the clinic within the next year. Turning Off Toxic RNA Reverses Myotonic MD in MiceMDA-supported researchers announced that the effects of type 1 myotonic muscular dystrophy (MMD1) in mice were reversed by targeting the disease’s toxic RNA. In a new mouse model of the disease, the research team gave the mice an antibiotic called doxycycline, which caused them to develop poisonous RNA. The mice then developed the symptoms of MMD1. When the antibiotic was stopped, the toxic RNA was stopped, and
the mice returned to normal, except in cases where the heart was
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