Union Takes on Muscular Dystrophy with Softball

The Prince George's County Professional Fire Fighters & Paramedics Association, Local 1619, of the International Association of Fire Fighters reached a milestone this past weekend in its support of the Muscular Dystrophy Association. The Local hosted its 30th Annual Softball Tournament at Watkins Regional Park in Largo, MD. One hundred fifteen softball teams from across North America and Canada participated in this year's event. The first tournament, held at White Marsh Park in Bowie, involved eight teams.

Tournament director Kevin Reilly says, "A lot of people have worked hard and played hard during the past three decades. But when the dust settles, we have raised nearly $1.5 million for muscular dystrophy research. All of that money remains focused on needs in the Metropolitan Washington area."

Harold Schaitberger, General President of the IAFF said, "For three decades, Prince George's County, Local 1619, has sponsored this tournament that has become an institution for our union and for MDA. Besides the fun, sport, and camaraderie that takes place each year as teams of fire fighters from across the U.S. and Canada gather in Watkins Park for competitive softball, this tournament continues to provide substantial support for MDA and Jerry's Kids."

"Those of us who have the opportunity to enjoy the weekend appreciate all of the hard work that goes into putting this event together. It epitomizes the longtime partnership between the IAFF and MDA," said Schaitberger.

"The lions share of research funding is provided by the International Association of Fire Fighters," said Sharon Hesterlee, Ph.D., Director of Research Development for the Muscular Dystrophy Association. Since 1954, the IAFF has raised over $220 million for muscular dystrophy research and is the largest national sponsor of the MDA.

General President Harold Schaitberger, on behalf of the 260,000 IAFF members, presented a record $18.3 million to Jerry Lewis during the 2003 Jerry Lewis Telethon. This is the largest single donation made in the 38-year history of the telethon.

How Important are Research Dollars?

"The research funds provided by the IAFF are huge," says Dr. Hesterlee. "For a discovery that holds significant promise in the laboratory to make the transition to an approved therapy is a long process. It involves regulatory processes, clinical testing, and is very expensive. Research funds are absolutely crucial to completing this process," Hesterlee says.

"For example, most of the research in the field of muscle biology is a byproduct of muscular dystrophy research. That knowledge would not be there without the consistent support of IAFF members," said Hesterlee.

"Investing in research of neuromuscular diseases has been vital in several medical breakthroughs that have extended the life expectancy of children and adults who have these terrible diseases," commented Schaitberger.

Treatments Made Possible through Funding

Pompe disease is a metabolic disorder, a form of muscular dystrophy, which was universally fatal in infants. The body is unable to break down glycogen allowing it to build up in the muscles. The glycogen build up leads to muscle weakness, an enlarged heart, and a weakened diaphragm leading to respiratory failure. In the past Pompe disease was fatal by age two.

Funds raised by IAFF members helped sponsor research by Y. T. Chen, M.D., Ph.D. at Duke University that resulted in a new treatment therapy that is currently in clinical trials with the Food and Drug Administration. "The new therapy has not worked for all patients with Pompe disease, however children are living beyond the age of two. Some are able to run and play," said Dr. Esterlee.

Dr. Esterlee says, "Twenty years ago patients suffering from Duchenne muscular dystrophy did not live past their mid to late teens. Today, we have patients living into there twenties. People are attending college and graduate school. This is the result of research and improved medical care.

In the next two years, clinical trials of two new therapies, one gene and one drug therapy, for Duchenne muscular dystrophy are on the horizon. Clinical trials of a new therapy for spinal muscle atrophy are also expected. Dr. Esterlee said, "All of this good work requires funding and the IAFF is helping to lead the way."

"Funds raised by the IAFF for the Muscular Dystrophy Association are vital for many reasons, including valuable medical research and equipment that helps prolong lives. Most importantly, our efforts gives families hope and comfort in knowing that people are there to help," said Schaitberger.

Web Links

  • Muscular Dystrophy Association - www.mdausa.org
  • International Association of Fire Fighters - www.iaff.org
  • Pompe Community, an online resource for Pompe disease sponsored by Genzyme Therapeutics - www.pompe.com