Call to Action for All Veterans with ALS
 

VA Issue Team Vice-Chair Scheduled to Testify to Congress
Call to Action for All Veterans with ALS



We are excited to announce that Jeff Faull, a veteran with ALS from our Greater Philadelphia Chapter and the Vice-Chair of The ALS Association's VA Issue Team, is scheduled to testify before the House Veterans Affairs Committee as it examines the recently introduced HR 5454 and other legislation at a June 12, Capitol Hill hearing. The Association has worked closely with the Committee as it prepares for the hearing and we are pleased that they have responded to our outreach by inviting Jeff to testify.

The ALS Association is leading the effort to pass HR 5454, which would establish ALS as a service connected disease, helping to ensure that veterans with ALS have access to health and disability benefits through the Department of Veterans Affairs. The bill was a top priority during our meetings with Members of Congress at National ALS Advocacy Day in May and we have worked closely with two of The Association's strongest supporters in Congress, Reps. Henry Brown (R-SC) and David Price (D-NC), as they introduced this bill earlier this year.

As a Navy veteran who served between 1992-2000, a husband, and father of two young daughters, Jeff brings an essential perspective to the hearing and can demonstrate first hand why HR 5454 is so urgently needed and why much more must be done to support veterans with ALS.


However, we need your help! We want to let the Committee know that there are thousands of other veterans just like Jeff who each day continue to fight for their benefits while they fight this disease.

Therefore, if you are a veteran with ALS, please go to our website and join our Roll Call of Veterans.

We will add your name, branch of service and hometown to the Roll Call and deliver it to the Committee at the hearing. Our goal is to identify as many veterans with ALS as possible and show the Committee the true magnitude of this disease, its impact on veterans and families, and the risk faced by those serving in the military today.

It is absolutely critical that Congress understands that this disease continues to strike our heroes from across the country and that Congress must act to ensure that veterans with ALS receive the benefits they deserve and have earned.

So reach out and be counted! Join the Roll Call of Veterans today!

If you've already signed-up, please enter your name and email address on the website and check your profile to make sure you're listed as a military veteran. And forward this Alert to every veteran you know. We want to make sure every veteran counts!

If you have any questions or would like assistance joining the Roll Call of Veterans, please contact us at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

Public release date: 6-Jun-2008
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Contact: Katie Pence
katie.pence@uc.edu
513-558-4561
University of Cincinnati

UC research shows risk of ALS exposure in Gulf War veterans is time limited
CINCINNATI—A new study, led by researchers at the University of Cincinnati (UC), says that cases of Amyotrophic Lateral Sclerosis (ALS) among soldiers who served in the first Persian Gulf War were caused by certain events during their deployment to the war zone, meaning the exposure and illness is not as widespread as previously thought.

The study is being published in the July issue of Neuroepidemiology.

Ronnie Horner, PhD, lead author of the study, along with colleagues at Duke University Medical Center found that among the 124 cases of ALS studied, 48 occurred within those soldiers deployed to the Persian Gulf region.

Horner says most of the deployed soldiers who developed ALS had disease onset in 1996 or earlier.

"The outbreak was time-limited," he continues. "We actually saw a declining risk after 1996; therefore, the risk is not continual. The pattern of disease onset suggests that whatever exposure occurred among these soldiers most likely happened sometime between August 1990 and July 1991, the period of the first Gulf War."

ALS is a fatal neurological disease caused by the degeneration of nerve cells in the central nervous system that control voluntary muscle movement. It is commonly known as Lou Gehrig's Disease after the baseball Hall of Famer who died of it in 1941.

Horner, director for the Institute for the Study of Health at UC, says it is an illness that usually affects people in their 60s and 70s.

"When it started occurring in veterans in their 30s and 40s—a low-risk population—researchers knew that something had occurred during that conflict to cause these affects."

The recent study builds on research published in 2003 that showed there was a two-fold increased risk of ALS among 1991 Gulf War veterans.

To gather this information, researchers screened medical files at Veteran Affairs and Department of Defense hospitals nationwide in search of patients with ALS or other motor neuron diseases. They also advertised a toll-free telephone number for Gulf War veterans to call if they had been diagnosed with ALS.

After identifying patients, the investigators verified their illness through medical record review or medical examination by neurologists who were experts in ALS.

The study indicated that these veterans had a higher-than-expected risk of ALS but did not answer whether the risk had diminished over time or what had caused the risk.

Now, researchers at Duke, Durham Veterans Affairs Medical Center and UC are taking it a step further and are conducting studies to find possible exposures these veterans had while deployed to the Persian Gulf area that may be the cause of the outbreak.

"We want to find out if there are specific areas where the soldiers moved through," Horner says. In addition, he says researchers are looking at the contributions of specific incidents—for example, the demolition of the munitions dump at Khamisiyah, Iraq, that released a low level of nerve agent, and smoke from the oil well fires—to the heightened risk of the disease in soldiers.

"With this information, we may be able to discover what caused the ALS outbreak and hopefully prevent similar instances from occurring in the future," Horner says.


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Other researchers involved in the study include Steven Grambow, PhD, Cynthia Coffman, PhD, Jennifer Lindquist, Eugene Oddone, MD, and Kelli Allen, PhD, all from the Durham VA Medical Center and Duke University Medical Center, and Edward Kasarskis, MD, PhD, from the Lexington VA Medical Center and University of Kentucky, Lexington.

This study was funded in part by the U.S. Department of Veteran Affairs and the Department of Defense.