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May 2006
-ALS Awareness Month Research News MDA News Pass it along! |
ALS AWARENESS MONTH
MDA leads the world in services and research for people with ALS — Lou Gehrig’s disease. As the nation observes ALS Awareness Month in May, MDA will raise public recognition of its worldwide leadership in the fight against ALS.
In communities across the country, MDA offices are holding educational seminars, and securing official proclamations from their states’ governors. Keep an eye on your local media, and you may see MDA’s new print and video public service announcements about ALS, and human interest stories about people MDA serves.
Also placing MDA in the spotlight — with coverage by several television networks — was Stuart Nichols of Kingwood, Texas, who completed his goal of attending a baseball game in every major league ballpark in North America. On May 2, Nichols, who has ALS, and his family threw out the first pitch when the Arizona Diamondbacks played the Los Angeles Dodgers in Phoenix — the 30th and last park on his list. Learn about MDA’s research progress in ALS over the past year.
MDA Funds Gene-Screening Project to Find
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TGen is set to scan the genomes of 1,000 patient samples collected from clinical sites across the country during the year-long study.
The grant is supported by MDA’s Translational Research Program, whose focus is moving laboratory research quickly into the clinic. It was made possible largely thanks to Augie’s Quest (see next item).
Bash for Augie’s Quest Raises Record Amount for ALS
The Bash for Augie’s Quest, held March 22 in Las Vegas, raised an outstanding $2.8 million for MDA’s ALS research.
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From left: Lance Armstrong, guest speaker; Augie Nieto; and emcee Bob Saget |
Hosted by Augie and Lynne Nieto, co-chairpersons of MDA’s ALS Division, the event drew more than 2,000 participants, including celebrities and fitness industry leaders.
Nieto’s ALS campaign with MDA, Augie’s
Quest, has raised about $4 million for MDA’s
ALS Division research. Nieto and MDA staff have several other events on
the horizon, including next year’s Bash to be held in San Francisco.
RESEARCH NEWS
First U.S. Trial of DMD Gene Therapy in Progress
In a long-awaited development, the first U.S. human gene therapy trial for Duchenne muscular dystrophy (DMD) is in progress at the Columbus (Ohio) Children’s Hospital. The trial is supported by MDA and Asklepios Biopharmaceutical Inc. (AskBio).
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Andrew receives comfort from his mom, Julie, while Mendell marks Andrew’s arm in preparation for the injection. |
The trial is the culmination of 20 years’ work by MDA researchers, building on the discovery in 1986 of the genetic flaw in DMD.
On March 28, neurologist Jerry Mendell, co-director of the MDA clinic at Columbus Children’s Hospital, administered the trial’s first injection of AskBio’s Biostrophin into the biceps of Andrew Kilbarger, 8, of Lancaster, Ohio. Six boys will be tested during the trial, to establish safety of the procedure.
Biostrophin contains a functional gene for
dystrophin, the muscle protein missing in DMD.
MDA NEWS
MDA Issues Revised Booklet for Parents
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MDA has issued a revised version of its booklet for parents, “Learning to Live with Neuromuscular Disease.” The new edition retains the original text that offers coping strategies for families who have children with neuromuscular diseases.
The new booklet adds adapted versions of several Quest articles about parenting, photos and quotes from families, and children’s artwork from the MDA Art Collection.
Luke, Billy Tour to Thank MDA Sponsors
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MDA National Goodwill Ambassador Luke Christie, who has spinal muscular atrophy, and his family are meeting with several MDA national sponsors this spring and summer to thank them for their support of the Association.
In February, Luke, 12, and MDA National Youth Chairman Billy Gilman wowed some 5,000 brokers at the ERA International Business Conference in San Francisco.
Among other appearances, the Christies also spoke at the National Child Care Association Annual Leadership Conference in Las Vegas in March. Gilman represented MDA at the DECA International Career Development Conference in Dallas.
Viva Las Vegas
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The 2006 Jerry Lewis MDA Labor Day Telethon
returns to Las Vegas Sept. 3-4 after a 12-year hiatus. It will be broadcast
nationally from the South Coast Hotel & Casino. Watch this newsletter for
more details.
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