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October 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
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"Rousing success" is almost an understatement in describing the results of the 42nd Jerry Lewis MDA Labor Day Telethon. The final "tote" at the end of the 21½-hour marathon fund-raiser was a record-breaking $63,759,478. Once again, MDA's largest national sponsor, the International Association of Fire Fighters, outdid itself, this time with a record-breaking contribution of $25 million, representing the yearlong efforts of thousands of fire fighters across the country. Neither MDA nor IAFF is resting on its laurels, of course. Fund raising for the fight against neuromuscular diseases is a 24/7 endeavor, and planning is already under way for Telethon 2008.
Confirmed: The Telethon's Star is a Star Indeed
Results of a national survey by Nationwide Mutual Insurance show that 43 percent of Americans consider Jerry Lewis the most influential celebrity of all at getting the word out about an issue and effecting positive change. The next four highest-ranking celebs were Oprah Winfrey, Michael J. Fox, former president Jimmy Carter and Bill Gates. Children's and youth causes topped the list of those that 64 percent of survey respondents considered the most important.
MDA's research and services 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 year round. |
Jerry Lewis Urges Congress to Protect Medicare Benefits of People with Neuromuscular Diseases
In early October, Jerry Lewis sent letters to Congress urging passage of legislation protecting the Medicare benefits of people with neuromuscular diseases who rely on complex medical equipment and technology, such as high-tech power wheelchairs. H.R. 2231, the Medicare Access to Complex Rehabilitation and Assistive Technology Act of 2007, would exempt "all complex rehabilitation products and assistive technologies" from Medicare's competitive bidding policy, which limits equipment selection to one or two pre-selected equipment vendors. MDA's National Task Force on Public Awareness began the push for passage of H.R. 2231 in July when it endorsed the bill in a letter to Congress.
Wisconsin Man is Top Achiever
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Michael Neufeldt of New Berlin, Wis., has received the Robert Ross National Personal Achievement Award for 2008. The honor recognizes people with neuromuscular diseases who are standouts in the areas of personal achievement and community service. Neufeldt is an outstanding scholar, author, Web designer and TV personality who has donated countless hours on behalf of people with disabilities. A member of MDA's National Task Force on Public Awareness, he has Emery-Dreifuss muscular dystrophy.
Bradley Walker Wins Top Bluegrass Award
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Country and bluegrass vocalist Bradley Walker of Athens, Ala., was named the male vocalist of the year at the 2007 International Bluegrass Music Association Awards. Walker, who uses his rich baritone to blend country and bluegrass styles, released his first CD, Highway of Dreams, in September 2006. He has performed several times on the Jerry Lewis MDA Telethon, most recently this year. Walker, who uses a wheelchair for mobility, has nemaline myopathy.
Luke Takes on New Responsibilities Next Year
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Luke Christie, 14, has served two very active terms as MDA's National Goodwill Ambassador, traveling the country to spread MDA's message of hope. Now the articulate and energetic teen assumes related duties as goodwill ambassador in 2008 for the Harley-Davidson Motor Co., one of MDA's largest national sponsors. Luke, who has spinal muscular atrophy, will represent MDA at assorted H-D fund-raisers, including the company's 105th Anniversary Celebration and Ride over Labor Day weekend.
Billy Continues Role as Youth Spokesperson
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Award-winning singer Billy Gilman will continue his role as MDA's National Youth Chairman in 2008. This will be his sixth term as MDA's liaison with youth and young adults across the country. Interspersed with a very successful performing career, Gilman, 19, helps spread word of MDA's battle against muscle-wasting diseases as he travels, does news media interviews and attends Association fund-raising events.
Toys "R" Us Catalogs Available at
Local MDA Offices
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The 2007 edition of the Toys "R" Us Toy Guide for Differently-Abled Kids showcases more than 80 toys selected for their educational and developmental value for children with physical and/or cognitive disabilities. Each toy has been evaluated by the National Lekotek Center which specializes in promoting play for children with special needs. Toys "R" Us has made a quantity of the catalogs available for distribution at local MDA offices; they also can be found in all Toys "R" Us stores, by calling 1-800-TOYSRUS, or by visiting the Toys "R" Us Web site.
MDA Publications Receive National Honors
Several articles in both Quest and the MDA/ALS Newsmagazine were recognized by the 2007 National Health Information Awards. The awards honor the nation's best consumer health information programs and materials.
Quest articles receiving awards were: "To Register or Not" (November-December 2006), about disease registries; "Helping Kids Understand" (two articles, July-August 2006), about talking to children about diagnosis and therapy issues; "Let the Beat Go On" (March-April 2006), about cardiac care; "Parenting" (two articles, May-June 2006), about finding child care and summer activities; and "Fear, Dread and Loathing" (November-December 2006), about special needs trusts.
MDA/ALS Newsmagazine was recognized for a September 2006 package on feeding tubes and nutrition.
Sign Up for Advance Notice of
Quest's Digital Companion
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The electronic version of MDA's Quest magazine is up and running on the Association's Web site. Now, readers can receive advance word when the latest digital issue is about to be posted online. Send an e-mail to questonline@mdausa.org to receive an e-card reminder every two months. The digital magazine contains all the content of its hard-copy counterpart.
RESEARCH NEWS
Decorin Helps Repair of Damaged Muscles
Researchers Johnny Huard and Xiao Xiao, both of whom have received MDA funding in recent years, were part of a team that recently found that a protein named decorin improves muscle regeneration and repair, as well as helping prevent scar tissue formation. In work at the University of Pittsburgh and Children's Hospital of Pittsburgh, the group worked with mice that have a disease resembling Duchenne muscular dystrophy. Muscles treated with decorin genes formed less scar tissue and regenerated better than muscles that were left untreated, a finding that offers promise for muscles damaged by disease or injury.
Utrophin Shows Therapy Possibility in DMD Mice
MDA-funded researchers George Karpati, Josephine Nalbantoglu and Basis Petrof are among those investigating whether injections of genes for the muscle protein utrophin could be useful in treating Duchenne muscular dystrophy. The team did its work at McGill University in Montreal using mice with a DMD-like disease. Utrophin is closely related to the dystrophin protein that is lacking in people with DMD.
Heart Damage May be Connected to
Lack of Dysferlin
A deficiency of the protein dysferlin leads to type 2B limb-girdle muscular dystrophy and to Miyoshi distal muscular dystrophy. Now MDA grantee Kevin Campbell and colleagues at the University of Iowa in Iowa City (and others at the Medical College of Georgia) have found a lack of dysferlin also may lead to heart damage. They suggest specifically that strenuous exercise by people with those types of muscular dystrophy could lead to heart injury.
FSHD Accompanied by High Levels of Protein
People with facioscapulohumeral muscular dystrophy (FSH) were found to have high levels of the protein mu-crystallin in research conducted by MDA grantee Robert Bloch at the University of Maryland School of Medicine. Levels of the protein were lower in people without neuromuscular diseases, and in those with other forms of muscular dystrophy. The finding adds to existing theories about the molecular basis of FSH.
Multiple Proteins Affect Muscle Growth
Because the protein myostatin is known to limit muscle growth, it often is the target of researchers wanting to preserve or increase muscle in people who have any of the muscular dystrophies. Now MDA-funded Se-Jin Lee at Johns Hopkins University in Baltimore has found myostatin is not the only player involved in muscle growth regulation. His studies found at least three proteins that regulate muscle mass in mice, and understanding their interaction may be critical to developing treatments for humans with muscle-wasting diseases.
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