August 2009
In This Issue:
And now, from Las Vegas, the Telethon!
Your bid can make a difference!
Toys “R” Us teams with MDA
Some MDA summer camps canceled
MDA Advocates help convince legislators to change Medicare proposal
Seeking federal funds for SMA research
Jerry Lewis memoirs continue to elicit praise
Mattie's mother has a book in the works
Breakthrough in MMD1 research
Protein substitutes for protein
Pond scum-ALS connection not substantiated
Drug shows limited benefit in MMD1
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Privacy Policy
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May 2009
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February 2009
November 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
And now, from Las Vegas, the Telethon!
In a few short weeks, viewers from around the world will be treated to that fabulous entertainment extravaganza — the Jerry Lewis MDA Telethon. Airing live from the South Point Hotel, Casino & Spa in Las Vegas, the 44th broadcast of the Telethon will begin at 9 p.m. EDT Sept. 6 and last 21½ hours.
MDA's “Love Network” of 179 television stations, in conjunction with the Internet, will carry the Telethon's messages of help and hope to every state and around the world. Viewers can find their local “Love Network” station and broadcast times on MDA's Web site.
Comedy legend Jerry Lewis (who was awarded a Jean Hersholt Humanitarian Award Oscar from the Academy of Motion Picture Arts and Sciences for his dedication to the MDA cause) has not missed a Telethon in 43 years. His energetic presence will be backed up by an array of celebrities.
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Billy Gilman |
Alison Sweeney |
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Tom Bergeron |
Ace Young |
For the first time in more than four decades, Telethon anchor and Jerry's close friend Ed McMahon will not be among the cast. Ed died in June at age 86. His unique blend of warmth and good humor are irreplaceable, and no one else will assume the anchor position he held. MDA has posted a tribute page to Ed on its Web site.
Serving as Telethon co-hosts this year will be TV personality Jann Carl, Nancy O'Dell (“Access Hollywood”), Alison Sweeney (“Days of Our Lives” and “The Biggest Loser”), and recording artists Ace Young and Billy Gilman. Tom Bergeron (“Dancing with the Stars”) also will be featured.
Throughout the show, viewers will hear the personal stories of families coping with forms of muscular dystrophy and about the help provided by MDA.
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Jann Carl, Nancy O'Dell
& Jerry Lewis |
Lighting up the set with her vivacious presence will be MDA National Goodwill Ambassador Abbey Umali, 10.
Augie and Lynne Nieto, co-chairs of MDA's ALS Division, will make appearances throughout the Telethon to brief viewers on MDA's battle against ALS. Telethon co-host Nancy O'Dell (also co-host of “Access Hollywood”) serves as MDA's National ALS Ambassador.
Your bid can make a difference!
Now in its second year, the Jerry Lewis MDA Telethon National Online Auction offers a wonderful shopping opportunity. Thousands of unique items in categories such as travel, dining, sports, electronics and much more are yours for the bidding.
The auction will run from Sept. 1-15, so mark your calendar and get ready for the action!
Toys “R” Us teams with MDA
MDA is once again helping alert families about the Toys “R” Us Toy Guide for Differently-Abled Kids. The 2009 Guide, to be released August 20, features toys that promote fun, education and skill development for youngsters with mobility or cognitive challenges. Each toy has been evaluated by the nonprofit National Lekotek Center. Local MDA offices will have copies of the Guide available for distribution, and it also will be posted online at www.toysrus.com/differentlyabled.
Some MDA summer camps canceled
This June, for the first time in the 53-year history of the program, MDA had to cancel 47 of its 80 summer camp sessions, in order to protect children with weakened respiratory muscles from the H1N1 swine flu virus (the other 33 camp sessions already had taken place). Although campers and counselors were prescreened for flu symptoms, at least 14 confirmed cases of swine flu were reported after campers returned home. (No campers died from the flu.) The Association decided the threat to other campers was too great to continue the 2009 camp program, and the U.S. Centers for Disease Control and Prevention concurred, calling the decision “prudent.” Children with weakened respiratory muscles who get the flu are more susceptible to complications and pneumonia.
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Unfortunately, most of the fees associated with camp already had been paid. It costs a little over $800 to send a child to MDA summer camp, although there is no charge to families. Any camp costs that may be recovered will be used for next year's camp program. Meanwhile, in areas where camp was canceled, local MDA field offices delivered camper care packages filled with gifts and goodies donated by generous MDA camp supporters, and planned short events in an attempt to give campers some alternative summertime fun. Preparations already are under way for the 2010 camp season, which will be better than ever!
MDA Advocates help convince legislators to change Medicare proposal
MDA's Advocacy department worked vigorously to amend a proposal in the U.S. House of Representatives that would have negatively impacted people receiving power wheelchairs from Medicare. The proposal, part of the Americans Affordable Health Choices Act being crafted by the House of Representatives Tri-Committee on health care reform, would have eliminated Medicare beneficiaries' ability to purchase their chairs during the first month of rental, potentially resulting in higher costs and fewer custom wheelchair options being available from vendors. After MDA sent an alert to its advocacy network, more than 150 contacted their representatives. Thanks to their efforts, in concert with those of other advocacy groups, the Tri-Committee amended its proposal so that Group 3 wheelchairs (the type used by most of those MDA serves) retain the first-month purchase option.
“Of course, the ideal would be for all power wheelchairs to be available as a first-month purchase option,” said MDA Vice President for Advocacy Annie Kennedy. “But we are pleased to report that this amended proposal addresses the majority of the concerns that were of the most significance to our community.”
MDA's Advocacy program will continue to issue updates and alerts as the health care reform package evolves.
Seeking federal funds for SMA research
The Advocacy team also is promoting the SMA Treatment Acceleration Act of 2009 (H.R. 2149 and S. 1158). The Act would provide federal support to complement private funding being invested to find a treatment for spinal muscular atrophy (SMA). MDA's Advocacy program is asking members of the MDA community to contact their representatives and urge their support of this important legislation.
Jerry Lewis memoirs continue to elicit praise
Four years ago when Doubleday published Dean and Me (A Love Story), it made the New York Times best-seller list. Now the book, written by MDA National Chairman Jerry Lewis and James Kaplan, has been recognized by People magazine as one of its Top 10 Celebrity Memoirs. The book tells the story of how Lewis and crooner Dean Martin met in 1945, paired up to become fabulously successful entertainers, then dissolved their partnership 10 years later — only to recover it in a famous surprise encounter brokered by Frank Sinatra live on the Telethon.
Mattie's mother has a book in the works
Jeni Stepanek, mother of late MDA National Goodwill Ambassador Mattie J.T. Stepanek, signed with Dutton publishers to write a book entitled Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs. Due to be released in November, the book will tell the story of the highs and lows, poverty and celebrity in Mattie's remarkable life. Included will be previously unpublished photos, essays, poetry and Mattie's correspondence with such influential friends as former president Jimmy Carter and Oprah Winfrey. Maya Angelou has written the book's foreword.
RESEARCH NEWS
Breakthrough in MMD1 research
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Charles Thornton |
Researchers have found a critical key to blocking the cause of myotonic muscular dystrophy type 1, in a discovery that could have major implications for finding a treatment for the disease, and possibly other forms of muscular dystrophy. Using a synthetic molecule — morpholino antisense oligonucleotide CAG25 — MDA-supported researchers were able to block disease-causing genetic instructions in cells and reverse one aspect of the disease process. Mice muscle cells injected with CAG25 released a protein held hostage by defective genetic material. The released protein resumed its normal functions, and the mice muscles showed improvement in their ability to relax after contracting. “What we have now is proof of concept that this general approach for treating myotonic dystrophy is potentially effective,” said MDA grantee Charles Thornton, senior author of the study published July 17, 2009, in the journal Science, and co-director of the University of Rochester (N.Y.) Wellstone Muscular Dystrophy Cooperative Research Center. “The prospects for developing treatments for myotonic dystrophy are looking bright.”
Protein substitutes for protein
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Nigel Laing |
A protein present in skeletal muscles during fetal development and in the heart after birth apparently can compensate for a similar protein that's missing in some people with the muscle disease nemaline myopathy. A multinational team of scientists bred mice that were missing alpha actin protein in their skeletal muscles, but had extra alpha actin protein in their cardiac muscles. They found the cardiac alpha actin compensated well for the missing skeletal alpha actin. The research team, which included MDA grantee Nigel Laing at the University of Western Australia in Perth, said the findings could lead to development of a treatment for some cases of human nemaline myopathy.
Pond scum-ALS connection not substantiated
Despite some reports in the news media this spring, scientific researchers say there is no confirmed connection between blue-green lake algae and increased frequency of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). Some news reports indicated that people living around Lake Mascoma in New Hampshire have a risk of developing ALS that is 25 times greater than for people in other locales. However, Lorene Nelson, an epidemiologist at Stanford (Calif.) University, urged caution, noting that many reported clusters of ALS “have not withstood scientific scrutiny” and noting there are other factors that could be skewing the numbers. Nelson has MDA funding to study genetic and environmental interactions involving ALS.
Drug shows limited benefit in MMD1
The drug Iplex, developed by the Richmond, Va., biopharmaceutical company Insmed, did not improve muscle function, strength or endurance in trials involving 69 adults with myotonic muscular dystrophy type 1 (MMD1, also called DM1). However, measurements of insulin sensitivity — the ability of cells to respond to insulin — did show improvements in trial participants. In MMD1, insensitivity to insulin (insulin resistance) may contribute to muscle weakness and atrophy. MDA helped support the clinical trial. Insmed, which also was considering a trial of Iplex in ALS (amyotrophic lateral sclerosis), decided in late July to halt development of the drug for now.
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