MDA eUpdate

July 2009


 In This Issue:

MDA NEWS

 
  • Longtime MDA friend and supporter Ed McMahon dies
     
  • Neurology academy elects MDA grantee president
     
  • MDA alerts air travelers with respiratory equipment
     
  • SMA legislation needs community support
     
  • New MDA online community is full speed ahead
     
  • Two handsome pieces join the MDA Art Collection
     
  • Young MDA spokespeople on the road

    RESEARCH NEWS

     
  • Gene change boosts ALS survival time
     
  • Leaky spinal cord barriers and ALS
     
  • Blocking a protein helped mice with DMD-like disease
     
  • New promise for stem cells on multiple fronts
     
  • Utrophin injections strengthened 'DMD mice'




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    Privacy Policy


    Previous Issues:
    May 2009
    March 2009
    February 2009
    November 2008
    October 2008










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    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

    Longtime MDA friend and supporter
    Ed McMahon dies

    Jerry Lewis and Ed McMahon
    Ed McMahon, a staunch supporter of MDA for more than four decades, died on June 23 at age 86. One of America's best-known television personalities, McMahon served 41 consecutive years as anchor of the Jerry Lewis MDA Labor Day Telethon. He was an MDA corporate member from 1974 to 1988, served as an MDA national vice president since 1992 and became a member of MDA's Board of Directors in 2001. MDA National Chairman Jerry Lewis called McMahon a dear friend. “He was my right-hand man — it's hard to imagine doing the show without him.” MDA posted a tribute page, including a video of Telethon moments, in honor of McMahon.

    Neurology academy elects MDA
    grantee president

    Longtime MDA research grantee and MDA-affiliated clinician Robert Griggs has been elected president of the prestigious 21,000-member American Academy of Neurology. Griggs has a current MDA grant to study the effectiveness of two drugs in treating periodic paralysis. Earlier he had Association support to correlate genetic and molecular defects underlying various forms of periodic paralysis. Griggs sees patients at the MDA clinic at the University of Rochester (N.Y.) Medical Center. He has published more than 300 scientific papers and 19 texts related to medicine and neurology.

    MDA alerts air travelers with
    respiratory equipment

    Airplane
    MDA used its Web site and e-mail to notify people who use respiratory equipment about a new ruling issued May 13 by the U.S. Department of Transportation (DOT). Ventilators, respirators and related equipment now must carry a label certifying that the equipment meets all Federal Aviation Administration safety requirements. If equipment lacks the label, airlines can refuse to let the passenger board, or may require the respiratory equipment to be turned off during the flight. Travelers may contact the manufacturer to obtain the required label. More details can be found in the full alert.

    SMA legislation needs community support

    US Capitol
    MDA's Advocacy Department in Washington, D.C., is lobbying, for passage of the SMA Treatment Acceleration Act (H.R. 2149 and S. 1158), which would dedicate federal funds to lifesaving SMA research. MDA is working with other members of the spinal muscular atrophy (SMA) advocacy community on passing the legislation. More information about this and other legislation, and how to contact federal legislators to support specific bills, is available on the the MDA site.

    New MDA online community is full speed ahead

    myMDA
    MDA recently launched the online community myMDA, where people affected by neuromuscular diseases can meet, socialize and share information. myMDA participants are people with muscle diseases, caregivers, volunteers, fundraisers, advocates, clinicians and researchers. Site features include video and text messaging, video and text blogging, message boards and forums, photo and music video sharing, and chat rooms. Local MDA offices also have a presence. Groups, such as the Duchenne muscular dystrophy community and MDA summer camp community, offer a place to meet others with similar interests and concerns. Registration is free and open to anyone 18 or older. Go to www.mda.org/myMDA to register.

    MDA’s research, services and education programs are vitally important to thousands of people every day. Please make your donation today and continue to make these programs possible.

    Two handsome pieces join the MDA Art Collection

    The Swing
    “The Swing”
    Two paintings by Baltimore artist Tommy Roberts have been accepted into the MDA Art Collection. Well known in the Baltimore/Washington, D.C., area, the 49-year-old Roberts has been involved with art since he was a child. He has Becker muscular dystrophy. One piece, “Coltrane Playing My Favorite Things,” depicts jazz great John Coltrane playing a soprano sax against a lively blue background. The second piece, “The Swing,” has a golfer (with more than a little resemblance to Tiger Woods) in full swing in front of a packed gallery. The MDA Art Collection was established in 1992 to focus attention on the achievements of artists with disabilities and to emphasize that physical disability is no barrier to creativity. The permanent Collection comprises some 360 works by artists with muscle diseases, ages 2 to 82, from all 50 states.

    Young MDA spokespeople on the road

    Abbey Umali
    MDA National Goodwill Ambassador Abbey Umali, 10, and MDA National Youth Chairman Luke Christie, 15, have been traversing the country, spreading the word of MDA's dual missions of help and hope. In May, Abbey and her parents attended Harley-Davidson Motor Company's annual Black & Blue Ball fundraiser for MDA in Milwaukee.

    Luke Christie
    Meanwhile, Luke, while in Anaheim for a DECA International Career Development Conference with his parents, stopped off to congratulate staff at a Denny's restaurant that raised more money for MDA than any other Denny's in the country. Luke has spinal muscular atrophy type 2, and Abbey has a form of Charcot-Marie Tooth disease.

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    RESEARCH NEWS

    Gene change boosts ALS survival time

    Survival time for people with sporadic (nonfamilial) ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) was recently found to increase by an average of 14 months if they carried a variant version of the gene for a protein known as KIFAP3. The variant reduces output from the gene so that less KIFAP3 protein is produced. Researchers say it's possible the reduction could reduce transport of toxic molecules inside nerve fibers. Lowering KIFAP3 production may be worth investigating as an ALS therapy, they said. MDA-supported researchers Orla Hardiman and Simon Cronin at the Royal College of Surgeons in Dublin, Ireland, were part of the team that released the findings.

    Leaky spinal cord barriers and ALS

    People with sporadic (nonfamilial) ALS appear to have a deficiency of “tight junction” proteins that keep large molecules from entering blood vessel walls in the spinal cord. That “leakiness,” say researchers, could lead to the entry of toxic molecules into the spinal cord and contribute to the nerve cell damage that characterizes ALS. Neurologist and MDA grantee Stanley Appel (who also directs the MDA/ALS Center at Methodist Neurological Institute in Houston) and colleagues said that preserving the integrity of the blood-spinal cord barrier could represent a target for therapeutic development.

    Blocking a protein helped mice with
    DMD-like disease

    Mouse
    Researchers have found that a protein called osteopontin may be a cause of fibrosis (scarring) of muscle tissue that occurs in Duchenne muscular dystrophy (DMD). Mice with a DMD-like disease that were bred not to have the protein showed less scarring and were stronger than mice that had the protein. Fibrosis is considered secondary to the effects caused by the absence of the muscle protein dystrophin in people with DMD, but blocking osteopontin still may have value in reducing scarring, researchers said. The eight-person investigative team included Eric Hoffman, who has MDA support for related work at Children's National Medical Center in Washington.

    New promise for stem cells on multiple fronts

    MDA-supported researchers have discovered that a protein called WNT7a increases production of adult stem cells in muscle tissue and builds tissue that contributes to larger, stronger muscles. When the protein was introduced into mouse muscle tissue, muscle mass increased by almost 20 percent. The finding by MDA-supported Michael Rudnicki, scientific director of Canada's Stem Cell Network, identifies WNT7a as a promising target for drug development in several degenerative muscle diseases. For more information, see the MDA Quest Extra article “WNT7a Protein Boosts Muscle Repair.”

    Utrophin injections strengthened 'DMD mice'

    Injections of the protein utrophin have proved beneficial for mice with a DMD-like disease. Utrophin is very similar to dystrophin, the protein that is missing in people with DMD, and researchers believe it may partially compensate for dystrophin's absence. Previous efforts to inject utrophin failed because of the protein molecule's large size and inability to penetrate cells, but researchers, including MDA grantee John Ervasti at the University of Minnesota-Twin Cities in Minneapolis, sidestepped that issue by using miniaturized utrophin molecules. Mice that received the protein showed fewer signs of muscle degeneration and lower levels of the muscle enzyme creatine kinase in their blood, indicating that muscle fibers were more intact.

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