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July 2006
MDA News Research News Pass it along! |
MDA NEWSMDA President & CEO Dies
Robert Ross, MDA’s chief executive for 44 years, died June 5 in Tucson, Ariz., at the age of 86. Under Ross’ guidance, MDA evolved into the world leader in providing research and services programs for people affected by neuromuscular diseases. During Ross’ tenure, MDA developed the most comprehensive program of medical and community services of any voluntary health agency in the country, including a network of 225 hospital-affiliated clinics and 37 MDA/ALS centers. Ross also was instrumental in creating MDA’s Labor Day Telethon in 1966 and persuading Jerry Lewis to star. The Telethon has been an American Labor Day tradition for 40 years. The MDA Robert Ross Memorial Fund has been established to receive contributions in his memory. Gifts can be made online or sent to 3300 E. Sunrise Drive, Tucson, AZ 85718. Summer Camp - The Best Week of the Year
It’s the time when barriers don’t exist, and kids discover a world created just for them. It’s the long-standing tradition of MDA summer camp. Many campers and counselors say it’s changed their lives, and almost all agree it’s the best week of the year. This year, MDA is sending more than 4,000 youngsters with neuromuscular diseases to 89 fun-filled, one-week camp sessions nationwide. Campers between the ages of 6 and 21 enjoy activities specially designed for their abilities, at no cost to their families.
MDA’s summer camp program, which celebrated its 50th anniversary in 2005, features activities such as fishing, boating, horseback riding, adaptive archery, wheelchair soccer, baseball and swimming, along with arts and crafts and talent shows. Mattie's PeacemakerIt’s been just over two years since best-selling poet, peacemaker and MDA National Goodwill Ambassador Mattie Stepanek died, but his message of hope and peace lives on through his books and now through the Peacemaker Bike.
Created by entrepreneur and philanthropist Lynn Jones, owner of Lynnco Custom Cycles in Cleveland, Tenn., the motorcycle honors Mattie’s legacy and helps spread the word about MDA. Jones created the bike with input from Jeni Stepanek, Mattie’s mom, and Mattie’s pal Harold Schaitberger, general president of the International Association of Fire Fighters (IAFF). The Peacemaker is touring the country to bring a greater awareness to the fight against neuromuscular diseases. It will be auctioned later this year on eBay, with proceeds benefiting the MDA Mattie Fund, which supports MDA research on childhood neuromuscular diseases. Smiling in the AislesGrocery stores and other retailers are turning their stores into Aisles of Smiles to benefit MDA this summer.
As consumers purchase featured products or buy mobiles with the Aisles logo,
participating manufacturers guarantee donations to MDA. In 2005, the campaign
raised more than $8.3 million for MDA’s programs.
Filling Boots for ‘Jerry’s Kids’For more than 50 years, the International Association of Fire Fighters’ (IAFF) has raised funds for MDA through its annual Fill-the-Boot drive.
The IAFF is MDA’s largest national sponsor, and each year, members of hundreds of IAFF locals invite the public at intersections, malls and sporting events to fill fire fighters’ boots with donations for MDA’s research and services programs. In 2005, the drive raised about $17.5 million. Keep your eyes open for Fill-the-Boot events benefiting MDA programs in your area.
MDA Promotes Progress During ALS
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From left: Diamondbacks General Partner Jeff Moorad, Panda Express President and COO Tom Davin; Diamondbacks first baseman Conor Jackson; MDA ALS Division Chairman Augie Nieto; Stu Nichols and his son, Andrew. |
MDA issued a new series of TV and print public service announcements, featuring Augie and Lynne Nieto, the co-chairpersons of MDA’s ALS Division. Augie’s Quest, a special campaign to support aggressive, fast-track ALS research, has raised $4.2 million to benefit MDA’s ALS research programs.
On May 2, the Arizona Diamondbacks launched ALS Awareness Month for MDA at its game in Phoenix against the Los Angeles Dodgers. With the game, Stuart Nichols of Kingwood, Texas, who has ALS, completed his goal of attending with his son a baseball game in every major league baseball park in North America. During pregame festivities, Nichols and his son, Andrew, threw out the first pitch.
During May, media outlets nationwide featured people with ALS who are served by MDA, and local MDA offices held special events to help educate the public about this devastating disease. Events included conferences and seminars; speaking engagements with ALS researchers and physicians; letter-writing campaigns; ALS nights at baseball games; and proclamations of ALS Day or ALS Month by local governments.
MDA Opens ALS Center in Memphis
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MDA’s ALS Division has designated the Baptist Memorial Hospital in Memphis, Tenn., as the site of its 37th MDA/ALS center. Please visit our Web site for a list of MDA’s centers across the country dedicated to ALS, or Lou Gehrig’s disease.
RESEARCH NEWS
FDA Approves Breakthrough Disease-Specific Treatment
In a long-awaited development, the U.S. Food and Drug Administration approved Myozyme as a treatment for Pompe’s disease, or acid maltase deficiency, a disease that affects people of all ages and is often fatal to infants. Myozyme is a laboratory-engineered form of the acid maltase enzyme, which is deficient in those with Pompe’s disease.
The lifesaving drug was developed by the Genzyme Corp., a Cambridge, Mass., biotechnology company, based on crucial MDA research. It’s the first definitive treatment for a genetic neuromuscular disease in MDA’s program.
Exon Skipping Promising in Duchenne MD
A research team that included two MDA grantees has achieved encouraging results in Duchenne muscular dystrophy research with a strategy known as exon skipping.
In mice with a disease resembling DMD, exon skipping was used to repair the mutated dystrophin gene that causes the disease by removing, or skipping, the mutation. The strategy resulted in widespread production of dystrophin and improved muscle function. Further testing will be aimed at increasing dystrophin production in the heart.
Detox Enzymes Possible ALS Risk Factor
Two independent research teams with MDA support recently reported that variations in the body’s paraoxonase enzymes, which help detoxify pesticides, insecticides and nerve gases, may be a risk factor for ALS.
The report indicates that some versions of the genes that instruct for these detox enzymes were more prevalent in people with ALS than in unaffected people. The finding may help to explain the increased risk of ALS among Gulf War veterans.
ALS Antibiotic Trial Gets Green Light
The Food and Drug Administration will allow a trial of the antibiotic ceftriaxone, which is used to treat neurological infections, in ALS. Following a yearlong delay, the FDA received supplemental data indicating the drug is safe to give intravenously to people with ALS.
The trial will evaluate the drug’s ability to enhance a chemical recycling
process in the nervous system and its benefit to people with ALS. The trial
will take place at several MDA/ALS
centers beginning this summer.
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