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January 2007MDA NEWS RESEARCH NEWS Pass it along! |
MDA NEWS
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Jerry Lewis |
MDA National Chairman Jerry Lewis was named the recipient of the 2006 FREDDIE Awards’ Lifetime Achievement Award for his contributions to improving worldwide health education through his work in behalf of MDA.
Presented by the 32nd annual International Health & Medical Media Awards on Nov. 3 in New York, the award puts Lewis in the ranks of past recipients Mary Tyler Moore, Christopher Reeve, Jonas Salk and Doctors Without Borders.
| MDA’s research, services and education programs assist people with neuromuscular diseases every day, and that’s why your continued support is so important to “Jerry’s kids.” Make your donation today, and help MDA continue these vital programs in 2007. |
Relive the Magic of Telethon 2006
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Jerry Lewis and Celine Dion at this year's Telethon |
You can see highlights of the record-breaking 2006 MDA Jerry Lewis Labor Day Telethon on MDA’s Web site. A 9-minute video shows clips of interviews, performances, and Lewis’ signature farewell song, “You’ll Never Walk Alone.”
The Luck o’ the Irish Awaits
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Maureen McGovern and Morgan Fritz |
The 24th annual Shamrocks Against Dystrophy campaign kicks off in February and culminates on St. Patrick’s Day. The program is the nation’s largest St. Patrick’s Day charity-related fund-raiser, with thousands of businesses selling green, gold and platinum Shamrock mobiles to benefit MDA.
Watch for displays featuring Shamrocks Chairperson Maureen McGovern and former MDA National Goodwill Ambassador Morgan Fritz at grocery stores, convenience stores, restaurants and other businesses in your community. Learn how your business can participate in the Shamrocks Against Dystrophy program by visiting the MDA Web site.
MDA Volunteer Leaders Return, Make News
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Luke Christie and Billy Gilman |
Four outstanding 2006 MDA volunteer leaders are returning for encores in 2007.
- Luke Christie, 13, of Due West, S.C., will serve a second term as MDA National Goodwill Ambassador. The exuberant youngster, who has spinal muscular atrophy, has been a hit at visits to national MDA sponsor gatherings and headquarters this year.
- MDA National Youth Chairman Billy Gilman has accepted MDA’s invitation to continue in the voluntary post that he’s held since 2003. The 18-year-old singer supports MDA through appearances at sponsor events and performs on the Telethon.
- Augie and Lynne Nieto of Corona del Mar, Calif., will take on their second year as co-chairpersons of MDA’s ALS Division. They’ll continue to raise awareness of MDA’s ALS program through media interviews, public appearances, fund-raising events and public service announcements. Through Augie’s Quest, the Nietos have helped raise more than $7 million to benefit the ALS Division’s research program.
- MDA 2002-04 National Goodwill Ambassador Mattie Stepanek posthumously received the Caring Institute’s National Caring Award in October. Stepanek was recognized for his work as MDA’s National Goodwill Ambassador and his role as a peacemaker.
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Augie and Lynne Nieto |
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Mattie Stepanek |
Let’s Go to Camp!
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Volunteer counselors are needed to help young people with neuromuscular diseases enjoy fun-filled, weeklong MDA summer camps across the country next year. A counselor is assigned to each camper to help the youngster with daily needs and recreational activities.
To obtain a volunteer application or learn about other ways to support MDA summer camp, contact your local MDA office, or call MDA national headquarters at (800) 572-1717.
MDA Influences New Medicare Policy
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In November, MDA National Chairman Jerry Lewis and MDA’s National Task Force on Public Awareness requested that the Centers for Medicare and Medicaid Services postpone new Medicare pricing and coverage policies for power wheelchairs.
The policies would have made it harder for people with severe and progressive disabilities to qualify for more technologically complex power wheelchairs. In response to an outpouring of objections led by MDA, CMS revised the new regulations to take the progressive nature of some disabilities into account. The new policies became effective Nov. 15.
RESEARCH NEWS
DUCHENNE MD RESEARCH
MDA scientists have seen significant new developments in Duchenne muscular dystrophy (DMD) research.
- Stem Cells Successfully Treat DMD in Dogs
MDA-supported investigators successfully used stem cells to treat dogs with a form of muscular dystrophy similar to Duchenne MD.
The researchers used a type of stem cell called mesangioblasts from living donors, and injected them into the arterial system of a limb. The dogs that received healthy donor cells responded well, with one walking at 13 months — an ability usually lost at about 8 months. The findings provide a major step toward possible clinical trials. - Preliminary Results of Drug Trial Encouraging
The experimental compound PTC124 has shown promise as a treatment for some boys with DMD.
PTC124 coaxes cells to “read through” genetic mutations that generally stop production of dystrophin, the protein missing in DMD. This results in the production of full-length dystrophin protein molecules. About 15 percent of children with DMD have this type of mutation.
With a $1.5 million grant from MDA, the compound was developed by the biotechnology company PTC Therapeutics of South Plainfield, N.J. The clinical trial continues.
ALS RESEARCH
Several findings in ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) also look promising.
- Genome Scan Gathers
Important
New Clues in ALS
National media covered the Nov. 30 announcement by the Translational Genomics Research Institute (TGen) presenting the first clues to previously unidentified genetic factors in ALS. The fast-track genetic scan that yielded more than 50 genetic abnormalities was co-funded by MDA.
Further research will explore drugs to correct the abnormalities. - Human Stem
Cells Aid Rats With ALS
MDA-supported researchers at Johns Hopkins University in Baltimore transplanted human stem cells into the spinal cords of rats with ALS and obtained significant benefits.
The human cells showed extensive maturation into neurons, and they delayed the onset and progression of the ALS-like disease, extending the life span of the rats by more than 10 days. - Arimoclomol
With MDA support, a 12-week, multicenter clinical trial determined that the experimental compound arimoclomol is safe and well tolerated in people with ALS.
Developed by CytRx, a Los Angeles-based biopharmaceutical company, arimoclomol has been shown to extend life in ALS-affected mice. Once it has approval, CytRx plans to launch a human trial early in 2007 that will detect changes in disease progression. - Drug Combination
Testing Moves to Next Stage
A clinical trial to test two drug combinations — minocycline with creatine, and celecoxib (Celebrex) with creatine — has completed its first stage. Both combinations have shown promise in mouse models of ALS and could lead to potential treatments, but further testing is needed.
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