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November 2008In This Issue: -MD-CARE Act gets new lease on life
RESEARCH NEWS-'Exon skipping' benefits heart muscle for DMD-New findings on cause of SMA -T-cells aid ALS mice Feedback Privacy Policy Previous Issues: October 2008 August 2008 May 2008 March 2008 February 2008 Pass it along! |
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. MDA NEWSHappy Holidays!Just a few short days until Thanksgiving, and then America rolls into the sequence of joyous celebration days that take us into the New Year! At this special time, MDA wishes all of those we serve — and those who make our lifesaving mission possible — a warm and wonderful holiday season. MD-CARE Act gets new lease on life
Jerry Lewis gave special thanks to legislators in Washington recently for approving the Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008. The amendments reauthorize and augment the provisions of the MD-CARE Act of 2001 which created six Centers of Excellence for muscular dystrophy research under the National Institutes of Health. MDA helped jump-start the effort by funding the first three centers. Now research efforts will be guided by a central coordinating committee and an enhanced data collection system that will keep tabs on research results and patient outcomes. MDA's Advocacy Department was a strong voice in helping pass the Amendments.
'Changing of the guard' for two MDA spokesmen
Luke Christie and Billy Gilman are well-known for their good works in behalf of MDA's mission. Now these two young men are moving on to other exciting roles for the Association. Luke, 15, was MDA's National Goodwill Ambassador in 2006 and 2007. In 2008, he served as MDA Goodwill Ambassador to the Harley-Davidson Motor Company, an MDA national sponsor. Singing sensation Gilman, 20, has been MDA's National Youth Chairman for the past six years. Now Luke is stepping into Billy's shoes as youth chairman, and Billy has been named an MDA Celebrity Ambassador, expanding the audience for his efforts to promote MDA's mission. MDA National Chairman Jerry Lewis is delighted the two close friends (sometimes known as the Dynamic Duo and Double Trouble) will keep directing their considerable energies and talents toward supporting MDA. "These two inspiring young men are both super-sharp and super-dedicated — the best of the humanitarian spirit," Lewis said. MDA Art Collection reaches a double milestone
The MDA Art Collection has just added the 350th work to its nationally renowned collection of artworks created by people with disabilities. The new item — a digital photo titled "Artist's Brushes in Sunlight" by Howard Feigenbaum of Hemet, Calif. — has special significance.
Feigenbaum's late mother, Adele, also has a piece ("Balloon Vendor") in the Collection, and the brushes in Howard's photo were hers. This is the first time a descendant of a Collection artist also has had a piece accepted into the Collection. Howard, 61, has facioscapulohumeral muscular dystrophy (FSHD), as did his mother, who died in 2002. The disease typically affects muscles of the face, shoulder blades and upper arms. Howard has been making photographs for more than 30 years. Mattie Stepanek park opens with fanfare
A long-awaited tribute to a beloved former MDA National Goodwill Ambassador was unveiled in October. The Mattie J.T. Stepanek Park at King Farm in Rockville, Md., was officially dedicated in front of nearly 1,000 audience members, including local celebrities and politicians, and members of the International Association of Fire Fighters (IAFF), Harley-Davidson Owners Group (H.O.G.s), and MDA family. Performances were given by a 100-voice choir, pipes-and-drums band and other notable entertainers, including Nile Rodgers ("We are Family"). Oprah Winfrey made a surprise appearance and spoke for several minutes about Mattie, who died just before his 14th birthday from the effects of mitochondrial myopathy. A peacemaker and New York Times best-selling poet, Mattie's youthful but profound prescriptions for settling mankind's differences impressed leaders throughout the world. The park is a 26-acre recreational facility that includes a statue of Mattie and his service dog Micah, and a Peace Garden. Check out MDA's holiday gift catalog
MDA's newest public awareness initiative takes the form of a catalog — more precisely a holiday gift catalog — that provides a way to honor those closest to you, and to give the gift of life to Jerry's Kids. Gift items include sending a child to MDA summer camp, making repairs to wheelchairs and leg braces, sponsoring a minute (or an hour) of neuromuscular disease research, and more — gifts that truly make a difference! When you give the gift in the name of a friend or loved one, that person will receive a handsome card from MDA explaining the donation. Catalogs are available through your local MDA office (800-572-1717) or by visiting www.mda.org/catalog.
 RESEARCH NEWS'Exon skipping' benefits heart muscle for DMD
MDA-supported researchers at Carolinas Medical Center in Charlotte, N.C., have shown that a technique called "exon skipping" can benefit not only skeletal, but also cardiac muscles in mice affected by Duchenne muscular dystrophy (DMD) — a significant step forward. Exon skipping tells the body’s cells to ignore or "skip over" genetic errors. In this case, the "skip" allowed mice to produce the protein dystrophin, which is missing in DMD. MDA grantee Qi Long Lu coordinated work of the Carolinas team, which also included MDA grantee Kanneboyina Nagaraju at Children's National Medical Center in Washington. New findings on cause of SMAThe cause of spinal muscular atrophy (SMA) has long been known to be loss of nerve cells (motor neurons) in the spinal cord. Now a group of researchers coordinated by MDA grantee Umrao Monani at Columbia University in New York say the cause may have earlier origins. The team found that the neuromuscular junction (meeting place of nerve and muscle fibers) may be the first casualty in SMA, preceding motor neuron loss. They said their findings "warrant the search for strategies that would maintain function at the neuromuscular junctions as a means of treating the disease." T-cells aid ALS mice
A group of researchers led by MDA grantee Stanley Appel at Methodist Neurological Institute in Houston has found that a type of immune-system cell protects motor neurons, which die in ALS, in mice with an ALS-like disease. The team developed ALS mice both with and without these immune-system T-cells. Mice without the T-cells had an accelerated disease course and died earlier than those with the cells. Appel said T-cell therapy may be of value in human ALS, but further studies are needed.
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