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

Aug. 31-Sept. 1: Telethon fireworks return from Las Vegas!

Just a few short weeks from now, the Jerry Lewis MDA Labor Day Telethon returns to entertain and enlighten audiences from around the world for a marathon 21½ hours on Aug. 31 and Sept. 1. The 43rd broadcast of the legendary show again will be beamed to viewers from the South Point Hotel, Casino & Spa in fabulous Las Vegas.

Once again, the star of the show — actor, singer, comedian, producer and philanthropist par excellence Jerry Lewis — will be center stage as millions of viewers tune in to hear his messages of help and hope. MDA's "Love Network" of 180 television stations, in tandem with the Internet, will carry his words around the globe.

Viewers can find their local Love Network station and broadcast times on MDA's Web site. They also can view the entire show online and even make a secure pledge of their support.

The nonstop entertainment parade will be marshaled by anchor Ed McMahon and co-hosts Tom Bergeron ("Dancing with the Stars"), Jann Carl ("Entertainment Tonight"), comedian Norm Crosby, award-winning recording artists Billy Gilman and Ace Young, Alison Sweeney ("Days of Our Lives" and "The Biggest Loser"), and Nancy O'Dell ("Access Hollywood;" see below).

Viewers will meet some of the families helped by MDA programs.

These include 9-year-old Abbey Umali, who will have plenty to say to Telethon viewers. She's MDA's current National Goodwill Ambassador, and a more charming young lady would be hard to find. Also in the spotlight will be Augie and Lynne Nieto, co-chairs of MDA's ALS Division, who will have important information about the battle against this devastating disease.

Nancy O'Dell

"Access Hollywood" host joins MDA ALS Division efforts

Popular television newsmagazine show host Nancy O'Dell joins the Telethon co-host team this year for the first time. She also has become a partner with MDA's ALS Division. Nancy's mother and best friend, who had ALS, died in June from effects of the disease. O'Dell is in her 12th season with "Access Hollywood," where she's been the show's co-host since 1999.

Bid and make a difference!

New this year at Telethon time: MDA will host the Jerry Lewis MDA Telethon Online Auction beginning Aug. 21 and ending Sept. 4. Find great deals on thousands of unique items in such categories as travel, electronics, golf, excursions, sports memorabilia and much more. So mark your calendars, and get ready to bid and make a difference for Jerry's Kids!

"Caps for cash" sums up
Miller Brewing fundraiser

Miller Brewing, an MDA national sponsor, has stepped up its support of the battle against muscular dystrophy and other neuromuscular diseases. As part of its "Better. Bolder. Summer." promotion, Miller will donate 10 cents to MDA for every Miller Lite bottle cap collected through Sept. 1.

Miller Lite drinkers can turn in their bottle caps to Miller retailer outlets or send them via mail. Eventually, all caps will wind up in Milwaukee in late August for Harley-Davidson Motor Company's celebration of its 105th anniversary. Miller is the official beer sponsor of that event, which is especially fitting because Harley-Davidson also is one of MDA's longtime national sponsors.

MDA Advocacy team is getting results
on Capitol Hill

MDA's Advocacy program is making its influence felt in Congress, to the benefit of people with neuromuscular diseases.

Among legislation supported by the Advocacy program is the Genetic Information Nondiscrimination Act (GINA), which was passed by Congress in May. GINA prohibits health insurance companies and employers from discriminating against people on the basis of genetic information.

A second major piece of legislation supported by MDA is the Medicare Improvements for Patients and Providers Act (MIPPA), which withstood a presidential veto to pass July 16.

The bill — which delays both a pay reduction for Medicare physicians and the start of a national competitive bidding program for medical and assistive equipment — safeguards the rights of those who use complex rehabilitative equipment by exempting that category of equipment from the competitive bidding process.

Many people with neuromuscular diseases require this type of high-tech equipment, such as power wheelchairs with tilt-and-recline or elevating leg lifts. Without the MIPPA exemption, the competitive bidding process would have made it difficult to obtain such equipment from local Medicare-approved vendors.

Updated resource for ALS caregivers is now available

A new publication, the MDA ALS Caregiver's Guide is hot off the press, and already proving to be a valuable resource for caregivers. The 210-page book is a major expansion of the 1997 MDA publication When a Loved One Has ALS: A Caregiver's Guide. Crafted with input from caregivers as well as ALS experts, the guide is available online and through MDA local offices.

RESEARCH NEWS

ALS lithium trials are under way

An MDA-supported trial of lithium carbonate in people with ALS is under way at 10 U.S. medical centers. Earlier this year, a small study in Italy suggested lithium might slow the progression of ALS. Ordinarily, the chemical element is used to treat bipolar disorder. The trial, which began in June, will include 100 participants and will last a year.

Sudden death more likely with type 1 MMD and heart complications

A study has found that adults with type 1 myotonic muscular dystrophy (MMD, also called DM) are at higher risk of sudden death if they also have either a severely abnormal electrocardiogram or an abnormally fast, irregular heart rate in the upper chamber of the heart.

MDA-supported cardiologist William Groh and colleagues released their findings after studying 406 adults with type 1 MMD since 1997. They found it's possible, though not confirmed, that implanting cardioverter-defibrillators in this group might be helpful in preventing sudden death.

LGMD1A symptoms worsen with excess myotilin

Mice studies suggest overproduction of the protein myotilin would worsen symptoms of type 1A limb-girdle muscular dystrophy in patients with this disease.

Researchers at Duke University, including MDA-supported Michael Hauser, knew the underlying cause of LGMD1A is a defective myotilin gene that causes production of abnormal myotilin. Their latest findings suggest that reducing amounts of both normal and abnormal myotilin, rather than adding normal myotilin, could be a workable LGMD1A therapy.

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