January 23, 2001

ON THE UNSURPASSED DEDICATION OF FIRE FIGHTERS

Why are fire fighters so strongly committed to helping the Muscular Dystrophy Association in the war against neuromuscular diseases?

"Fire fighters are dedicated to saving lives and protecting people," says Wesley Royal of International Association of Fire Fighters Local 122 in Jacksonville, Fla. "Our alliance with MDA has been in saving lives. Our primary objective is that a cure will be found."

The International Association of Fire Fighters has been an MDA national sponsor since 1954.

The IAFF has been a national sponsor of the Muscular Dystrophy Association since 1954. Formed in 1918, the IAFF is an AFL-CIO-affiliated labor union representing more than 242,000 professional fire fighters and emergency medical personnel in the United States and Canada.

Over the years, IAFF members have raised funds for MDA through Fill-the-Boot campaigns, softball tournaments, bowl-a-thons and other special events. Fill-the-Boot, the IAFF's primary fund-raiser for MDA, is a roadside campaign in which fire fighters greet motorists from street corners and ask them to drop donations into fire fighter boots.

In addition to their fund-raising efforts, IAFF members also dedicate many hours of personal time to assisting at MDA summer camps across the country.

On the 2000 Jerry Lewis MDA Telethon, IAFF General President Harold A. Schaitberger, who serves as an MDA national vice president, presented MDA National Chairman Jerry Lewis with a series of checks adding up to an annual fund-raising total of $14 million. That's an extraordinary testament to the dedication and abilities of this remarkable organization.

Some fire fighters have very personal reasons for wanting to see neuromuscular diseases vanquished.

Take the case of Dennis K. Haas, a retired fire fighter from Burnet, Texas. Haas was a member of IAFF Local 1044 in Abilene for 20 years before retiring.

His wife is affected by amyotrophic lateral sclerosis (ALS), a disorder that primarily affects adults and causes widespread destruction of motor neurons in the body, with resulting loss of muscle strength. The disease often proves fatal in only a few years after diagnosis, although cases can vary.

A few months ago, Haas wrote this letter to Jerry Lewis, host of the MDA Telethon:

"Dear Jerry Lewis:

"I am a retired fire fighter from Texas who has 'Filled the Boot' many times for MDA.

"I loved being part of such an honorable profession and loved seeing the IAFF president give you a check for millions of dollars each year, knowing I was part of it. But now I have an entirely different perspective.

"In June of this year my wife (who is 49) was diagnosed with ALS. I have watched a woman who had never been sick in our 14 years of marriage be ravaged by this disease in six short months. She experienced her first symptom in late February this year, and has already lost the use of legs, arms and hands. She was forced to quit her job in July, and we were forced to give up our home because of the loss of income.

"In my career, I have fought fire inside buildings where I could not see. I have been caught and 'run over' by fire in a wildland fire; and I have literally saved other people's lives. There is no way I can express the pain in watching the love of your life being attacked, and having no way to fight back. At the pace that this disease is progressing, I have very little time left with my wife.

"The only solace I can find right now in this world is knowing that the efforts of my brother fire fighters and MDA may someday prevent another family from experiencing this horribly emotional experience.

"My message to you is please continue the fight, because for those like me, it's the only fight we have."

Needless to say, Jerry Lewis and all of us at MDA were greatly moved by this letter, as we have been by the cases of other fire fighters in other cities whose lives have been thrown into turmoil due to this same disease.

Bruce Stevens, 50, of Charlotte, N.C., participated in Fill-the-Boot for nearly a quarter of a century. Several years ago he received a diagnosis of ALS. ALS made it impossible for Stevens to continue as captain on a fire truck. He performed less physically demanding duties for a while but eventually retired from IAFF Local 660 in Charlotte.

However, he continues to help MDA, sometimes accompanying MDA staff as a spokesperson when they travel to recruit other fire departments to help MDA.

He receives medical attention at the multidisciplinary MDA/ALS Center at Carolinas Medical Center in Charlotte. It's one of 22 such MDA centers dedicated to ALS treatment and research. Funds provided by Fill-the-Boot and other IAFF campaigns play a crucial role in keeping these centers operating.

Jim Driever, 45, of Pocatello, Idaho, had to retire from fire fighting 16 years ago due to the progression of ALS. He has lost the use of his arms, legs and speech but continues to communicate by computer.

He is currently working on creating a cookbook that will include fire fighters' recipes and pictures of people with ALS. He hopes that funds from sales of the book will be used to benefit MDA. He's trying to find a way to meet the substantial printing costs for the project.

If you wish to honor fire fighters for their phenomenal dedication to MDA, and if you wish to send a message of hope for fire fighter families that are caught in life and death struggles against neuromuscular diseases, there's one powerful way to do it.

Make a contribution to MDA, and help bring about the end of neuromuscular diseases all that much sooner. Follow the fire fighters' example and act quickly and without hesitation, for lives are at stake. Thank you!

With every best wish . . .

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