|
August 2007MDA NEWS RESEARCH NEWS 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 NEWS
|
|
The legendary Jerry Lewis MDA Labor Day Telethon, now in its 42nd year, is just a few weeks off. The show once again will be telecast from the South Point Hotel, Casino & Spa in Las Vegas, where Lewis lives, and he’s fully energized and ready to stride out on stage.
Thanks to MDA’s “Love Network” of 190 television stations, plus the Internet, this year’s message of hope is expected to reach tens of millions of viewers around the world.
|
You can find your local station and start time on MDA’s Web site. You also can view the show there during its broadcast and make a secure pledge online.
In addition to providing world-class entertainment, the Telethon will introduce viewers to families affected by neuromuscular diseases, who represent the thousands of people their donations are helping.
While your Telethon enthusiasm is building, why not get a head start on Labor Day? You can make a secure donation to help “Jerry’s kids” right here on the MDA Web site. |
You’ll also hear from MDA’s National Goodwill Ambassador, 14-year-old Luke Christie, and Augie and Lynne Nieto, the co-chairs of MDA’s ALS Division. They’re vital members of the MDA family and indispensable partners in the battle against muscle-wasting diseases.
Be sure to catch these MDA leaders, plus Jerry, MDA Board member Ed McMahon (this is his 40th year serving as Telethon anchor), and co-hosts Tom Bergeron, Jann Carl, Norm Crosby, Bob Zany and more. Serving as both co-host and performer will be award-winning recording artist Billy Gilman, MDA’s National Youth Chairman.
Chase Supports Search for Cures
Banking industry giant Chase Card Services, the credit card division of JPMorgan Chase & Co., is a new national sponsor of the Jerry Lewis Labor Day Telethon.
|
For every contribution that Telethon supporters make using a Chase credit card, Chase will donate an extra $5 to MDA, up to a maximum of $150,000. Chase cardholders — of which there are more than 140 million using Chase Visas or MasterCards — can make secure Telethon donations by phone or online.
Congress Proposes Gold Medal for Jerry Lewis
Legislation has been introduced in both the U.S. Senate and House of Representatives to honor MDA National Chairman Jerry Lewis with the Congressional Gold Medal for his lifelong philanthropy and contribution to entertainment.
|
Lewis, 81, is highly deserving of this honor, having hosted the MDA Labor Day Telethon for four decades and raised more than $2 billion to fuel the fight against rare but devastating neuromuscular diseases.
The House and Senate bills are similar to each other. In the House, H.R. 3035 is cosponsored by Reps. Donald M. Payne (D-N.J.), Jon Porter (R-Nev.) and Gus Bilirakis (R-Fla.). In the Senate, S.C.R. 1603 is cosponsored by Sen. John Ensign (R-Nev.), and Sens. Robert Menendez and Frank Lautenberg (D-N.J.).
The effort needs the approval of at least two-thirds of the House of Representatives and 67 senators to pass.
Check a complete list of the members of the U.S. Senate and House of Representatives to see if your congressional representatives have joined this effort. If they haven't, you may contact them through www.senate.gov or www.house.gov.
Renowned Researcher is MDA’s
New Board Chairman
Dr. R. Rodney Howell has been named MDA’s new chairman of the Board, succeeding Lois West of Hilton Head, S.C.
|
Howell, a pediatrician and special assistant to the Director of the National Institute of Child Health and Human Development of the National Institutes of Health, has been chairman of MDA’s Scientific Advisory Committee since 1989, and a Board member since 1994. He’s played a vital role in overseeing the Association’s most rapid period of growth in research progress.
Former National Goodwill Ambassador
Dies in Accident
|
Drew Johnson in 2002 |
Drew Johnson, 23, MDA’s National Goodwill Ambassador in 1991 and 1992, died June 29 in an automobile accident in his hometown of Zachary, La.
Born on July 4, 1984, Drew, who had Duchenne muscular dystrophy, had also received MDA’s Personal Achievement Award for Louisiana in 2002, and continued to be active with MDA in his community. He was finishing his senior year in college and planned to attend seminary to become a minister.
Receive Advance Word About
Quest Online Editions
This year, MDA began posting a digital version of its national magazine, Quest, to complement the print edition published bimonthly.
Now, readers who want to review the magazine as soon as it’s available can sign up to do so by sending an e-mail to questonline@mdausa.org. They’ll receive an e-card reminder every two months when the magazine’s latest issue is posted in its entirety on the Web site.
MDA Publications Honored
MDA Publications for and about people with neuromuscular diseases took top honors in two 2007 publishing competitions.
In the 2007 Apex Awards for Publication Excellence, the top Award of Excellence was given to "Breathe Easy/Respire con Facilidad," a booklet published in English and Spanish about respiratory care in neuromuscular diseases.
Articles in MDA’s Quest magazine received several honors in the 2007 Communicator Awards competition. Awards of Excellence were earned by “Helping Kids Understand” and "Happy Unbelievable Birthday." Another 2006 article, "Funding Freedom," earned an award of Distinction.
RESEARCH NEWS
PTC124 Trials Move on to Higher Dosages
A $1.5 million MDA grant to PTC Therapeutics of Plainfield, N.J., led to development of the experimental compound PTC124 and its use in clinical trials with 26 boys who have Duchenne muscular dystrophy.
Those trials proved so promising (each of the boys began producing dystrophin, the protein missing in DMD) that the research firm is now testing higher doses of PTC124.
Utrophin ‘Brake’ Suggests Possible
DMD Treatment
MDA-supported researchers at the University of Pennsylvania and the University of Ottawa have found a molecule that keeps utrophin — a muscle protein — confined to one small area of muscle fiber. By doing so, the molecule limits utrophin’s potential as a substitute for dystrophin in Duchenne muscular dystrophy.
However, MDA grantees Tejvir Khurana and Bernard Jasmin say that blocking the utrophin-confining molecule could become a strategy for treating DMD because utrophin is very similar to dystrophin.
Chemical Compound May Be New Means
for Treating SBMA
An experimental compound, called ASC-J9 has demonstrated remarkable effects in treating mice with spinal bulbar muscular atrophy.
Researchers, including MDA-supported Diane Merry at Thomas Jefferson University in Philadelphia, found ASC-J9 helps free up cell-regulating proteins that become trapped in DNA clumps in mice with SBMA.
Severity of Friedreich’s May Relate to
Enzyme Activity
Variations in an enzyme named DLD (dihydrolipoamide dehydrogenase) can affect the severity of Friedreich’s ataxia, according to researchers at the Mayo Clinic College of Medicine in Rochester, Minn., and Hadassah Hebrew University Medical Center in Jerusalem.
Grazia Isaya, supported by MDA in the research at Mayo, and colleagues found DLD can affect the breakdown of the protein frataxin to varying degrees. Reducing the enzyme’s ability to do so could lead to new therapies for the disease, which affects voluntary muscles and the heart.
Feedback
Feedback about this newsletter is welcome. General correspondence may be addressed to mda@helpmda.org
Unsubscribe
We appreciate your support and respect your privacy, so we'll only send these e-mail updates with your approval. If you don't wish to receive future e-mail communications from MDA, send an e-mail to remove@mdausa.org.
Privacy Policy
Information in the MDA Web site is for educational and entertainment purposes only, and is not intended to replace, and should not be interpreted or relied upon as, professional advice. By accessing the MDA Web site, you agree to the terms and conditions contained in its disclaimers. Please read MDA's Disclaimer and Privacy Policy.
What's New | Diseases | Research | Clinics & Services | Spokespeople | Publications | En Español | Telethon | How to Help | Video | Search | Help Now | Home