MDA TELETHON MAKES POSSIBLE VITAL RESEARCH, SERVICES, EDUCATION

TUCSON, Ariz., Aug. 7, 1998 -- Research by the world's top scientists, the nation's most comprehensive service program and up-to-the-minute public health education are all made possible by funds raised during the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Association.

In its latest fiscal year, MDA provided adults and children living with neuromuscular diseases with some $87.1 million in research, services and helpful information.

This year's Telethon, to be broadcast Sept. 6-7, will again be the Association's largest single source of income to support its programs to benefit those affected by 40 neuromuscular diseases.

For the first time ever, the Jerry Lewis MDA Labor Day Telethon will be broadcast worldwide, on some 200 "Love Network" television stations nationwide and live internationally on MDA's Web site at www.mda.org, hosted by AT&T and RealNetworks. The show originates from CBS Television City in Hollywood.

"Every Labor Day weekend, the American people show how much they care by phoning in pledges to our Telethon and participating in MDA events in their communities," said Jerry Lewis, MDA national chairman and star of the Telethon.

"It means the world to me to know that our generous viewers this Labor Day will help us exceed last year's $50.5 million total in Telethon pledges and contributions," he added. "It's their support that allows MDA to offer more services than any other voluntary health agency in the country, and makes the Association a world leader in cutting-edge research that will soon result in cures and treatments for destructive neuromuscular diseases."

Almost all of MDA's income is derived from private voluntary contributions. The Association is consistently ranked as one of the top national voluntary health agencies for the level of income expended on program services. In June, The Chronicle of Philanthropy listed MDA as one of the nation's top 25 grant makers among nonprofits that award grants, loans or gifts.

In its research program, MDA annually funds some 400 teams of scientists worldwide, spending nearly $25 million at an average of $40 a minute. Since last year's Labor Day broadcast, MDA investigators have:

• Begun preparation for human trials of gene therapy for Duchenne and limb-girdle muscular dystrophies.
  
  
• Successfully inserted the protein utrophin into mice, indicating that increased utrophin might be able to replace dystrophin, the protein missing in the muscle cells of youngsters with Duchenne and Becker muscular dystrophies.
  
  
• Discovered that a lack of the protein frataxin, important for keeping iron at normal levels in cells, underlies the disease Friedreich's ataxia.
  
  
• Identified the gene that, when flawed, causes oculopharyngeal muscular dystrophy, which primarily weakens muscles involved in opening the eyes and swallowing.
  
  
• Expanded promising clinical trials of potential new drug therapies for several neuromuscular disorders, including albuterol in facioscapulohumeral muscular dystrophy and oxandrolone in Duchenne MD.
  
  
• Maintained 17 MDA/ALS research and clinical centers across the country and continued human tests of four drugs that might become treatments for amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), including delivery of some drugs directly into the brain or spinal cord.
  
  
• Corrected the metabolic muscle disorder acid maltase deficiency, or Pompe's disease, in birds by intravenous injection of a protein into muscle cells, laying the groundwork for anticipated trials of the treatment in children.

In addition to its worldwide research efforts, MDA spends some $46.3 million a year on a comprehensive health services program. Among its efforts to help adults and children affected by neuromuscular diseases over the past year, MDA:

• Sent some 4,000 youngsters with neuromuscular diseases to 83 sessions of MDA summer camp, at a cost of $400 per camper.
  
  
• Provided for tens of thousands of visits to MDA's 230 hospital-affiliated clinics for initial diagnosis and follow-up treatment.
  
  
• Gave tens of thousands of flu vaccinations to help prevent those with neuromuscular diseases from developing potentially serious respiratory complications.
  
  
• Assisted with the purchase and repair of hundreds of wheelchairs and leg braces.
  
  
• Conducted meetings of more than 220 MDA-facilitated support groups for those with neuromuscular diseases and their families.

Telethon donations also helped support the Association's public health education program conducted through seminars, scientific conferences, brochures, videos, publications, media interviews, workshops and other presentations. Among the most popular of these programs are:

• MDA's toll-free information hotline, (800) 572-1717.
  
  
• The Association's award-winning Web site, at www.mda.org.
  
  
• Publications such as the bimonthly magazine Quest, "When a Loved One Has ALS: A Caregiver's Guide" and the forthcoming "Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy."
  
  
• Frequent exhibits of the MDA Art Collection with more than 180 works by over 370 artists with neuromuscular diseases (some works are created by several artists as group projects).

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