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February 2009In This Issue: -A Rare and Prestigious Award for Jerry Lewis
RESEARCH NEWS-Molecule Finding Could Lead to MMD Treatment-MDA Research Finding Among Top 10 Stories of 2008 -‘Exon-Skipping’ Trial Proves Promising for DMD -New Clinical Network Boosts Research on ALS & DMD -Two Firms Work to Develop ALS Therapeutics Delivery -International SMA Registry Available Online Feedback Privacy Policy Previous Issues: November 2008 October 2008 August 2008 May 2008 March 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 NEWSA Rare and Prestigious Award for Jerry Lewis
Jerry Lewis has devoted virtually all his adult life to serving as MDA National Chairman. His dedication and devotion were honored on Feb. 22 during presentations of the Academy Awards in Hollywood. The Academy of Motion Picture Arts and Sciences presented Jerry with one of its greatest honors, the Jean Hersholt Humanitarian Award. The award, granted infrequently, recognizes a person in the motion picture industry whose humanitarian efforts have brought credit to the industry. Thank you Jerry, for all you've done to help find cures. (Learn more about Jerry and his remarkable work by going to the Jerry Lewis page on the MDA Web site.) For the first time, MDA is offering for sale a two-hour DVD of special Telethon moments — The Best of the 2008 Jerry Lewis MDA Telethon. Clinic Directors Learn the Latest
Directors and staff from many of the 215 clinics in MDA's national network attended MDA's National Clinic Directors Conference in Las Vegas, Jan. 25-28. Experts in the fields of muscular dystrophy and related diseases addressed the gathering during three days of intensive information sharing. By staying attuned to research and clinical care advances, MDA clinic directors ensure their individual clinics stay abreast of advances in medicine and technology. 2008 Telethon Highlights on Tap
A nine-minute video clip of highlights from the 2008 Jerry Lewis MDA Labor Day Telethon is now available for viewing on MDA's Web site. Condensed from the full 21½-hour event in Las Vegas, the video offers glimpses of the best of the best from the legendary fundraising extravaganza. Outstanding on-stage performers, personal testimony from families served by MDA, and vignettes featuring the star of the show himself are right here! For the first time, MDA is offering for sale a two-hour DVD of special Telethon moments — The Best of the 2008 Jerry Lewis MDA Telethon. Four Years and Counting
Augie and Lynne Nieto of Corona del Mar, Calif., are showing no signs of slowing down in their roles as co-chairs of MDA's ALS Division. The Nietos are now in their fourth year as MDA spokespeople, making public appearances, giving interviews and hosting fundraising events in the fight against ALS. Augie received an ALS diagnosis in 2005 and the next year the couple teamed with MDA to begin Augie's Quest, an aggressive ALS research initiative which has raised $18 million for ALS research in just three years. Summer Camp Counselors Needed
Some 4,400 kids with muscular dystrophy and related diseases attended MDA summer camp in 2008 and had the time of their lives. Now MDA is getting ready for the 2009 camp season and, once again, the Association seeks volunteers to serve as one-on-one counselors to campers. The weeklong sessions are free to all kids who attend. Volunteers receive training prior to attending camp. To find out about the dates of your local camp and how to volunteer, call your local MDA office at (800) 572-1717. Shamrocks Lend an Irish Air to Stores Nationwide
Supermarkets and other retail businesses throughout America are taking on a distinctly festive Irish air from now through St. Patrick's Day on March 17. As part of MDA's Shamrocks Against Dystrophy program, the stores are selling green and gold Shamrocks mobiles to customers to raise money for the Association's research and services programs. Merchants hang the donor-signed Shamrocks mobiles in grand displays of Irish spirit and American philanthropy. Look for displays that feature Shamrocks chairperson Maureen McGovern and MDA National Goodwill Ambassador Abbey Umali. Businesses that would like to participate should contact their local MDA office. Quest Magazine is Now Online … and More
For many years, Quest, MDA's flagship publication, has been available not only in a hard copy version (distributed to more than 130,000 families nationwide), but also on MDA's Web site in a digital version that replicates the print magazine. Now Quest has its very own “landing page” on the MDA site. In addition to hosting the digital magazine, the page offers links to individual Quest articles, and a Quest Extra! section that's updated every week with the latest news and features.
 RESEARCH NEWSMolecule Finding Could Lead to MMD TreatmentA research team that included Charles Thornton, co-director of the MDA clinic at University of Rochester (N.Y.) Medical Center, has identified molecules that can block the genetic defect that causes type 1 myotonic muscular dystrophy. The finding could be a first step in developing a drug treatment for the disease, said the team, which received MDA research funding. MDA Research Finding Among Top 10 Stories of 2008The Harvard Health Letter has included in its top 10 health stories of the year an article about stem cell research advances by scientists at Harvard and Columbia universities. Hiroshi Mitsumoto, director of the Eleanor and Lou Gehrig MDA/ALS Center at Columbia, received MDA support for his role in the study. Using skin cells from a woman with ALS, the study team induced the cells to become like the cells of an embryo (without the ability to form an embryo). The development allows researchers to study the development of a cell with an ALS-causing flaw. ‘Exon-Skipping’ Trial Proves Promising for DMDA clinical trial conducted in England by AVI BioPharma of Portland, Ore., yielded promising results for treatment of Duchenne muscular dystrophy (DMD) using a laboratory-engineered molecule called AVI4658. The molecule causes muscle cells to ignore, or “skip over” a section (exon) of genetic instructions for the dystrophin protein, which is missing in DMD patients. The procedure, called “exon skipping,” is designed to cause cells to make nearly normal dystrophin. The trial was conducted in 10 boys ages 12 to 17 who, when injected with AVI4658 in their foot muscles, demonstrated significant dystrophin production in those muscles three weeks later. Investigators Stephen Wilton at the University of Western Australia and Judith van Deutekom at the Netherlands' Leiden University both received MDA funding for their roles in the trial. AVI BioPharma now plans to study intravenous delivery of AVI4658 and other exon-skipping compounds. New Clinical Network Boosts Research on ALS & DMD
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