Saturday, June 14, 2008

Veteran with ALS Testifies to Congress

The House Veterans Affairs Committee, Subcommittee on Disability Assistance received a first hand education about the impact ALS has on our military men and women during yesterday's Subcommittee hearing on HR 5454. Jeff Faull, a Navy veteran with ALS and Vice Chair of The ALS Association's VA Issue Team, testified before the Subcommittee and urged them to support HR 5454, which would establish a presumption of service connection for ALS, ensuring that veterans have access to health and disability benefits regardless of when or where they served in the military.

During the hearing, Jeff shared about his service in the military aboard the U.S.S. Theodore Roosevelt and gave the Subcommittee a clear understanding of the true nature of ALS, how it has impacted him and his family and thousands of others across the country.

"I can't make the walk to see [my daughter] Breanna play soccer. I don't have the arm strength to shoot a basketball with my older daughter Tiffany," he said. "I will more than likely be in a wheelchair when it comes time to teach them to drive. These are the treasures this disease steals from thousands of veterans every year. That is, before the disease takes our lives."

Jeff also shared the numerous studies showing that veterans are approximately twice as likely to develop ALS as those who have not served in the military. And he told the Subcommittee how the VA continues to deny veterans with ALS needed benefits despite the evidence linking the disease to military service.

"My question, as a veteran with ALS trying to establish service connection is what additional proof must I provide? How many more studies are needed? How many veterans have to develop ALS and die from it before the VA takes action?

"I can only hope that this quick glance into my life with ALS and attempts with service connection grant you the understanding to see the importance of establishing a presumption of service connection for all veterans with ALS, which is exactly what H.R. 5454 would do. We have to fight for our lives. We should not also have to fight for the benefits that the evidence shows we deserve."

Members of the Subcommittee repeatedly expressed support for HR 5454 throughout the hearing, which also examined several other bills under the Subcommittee's jurisdiction. However, immediately following Jeff's testimony, Subcommittee Chairman John Hall (D-NY) succinctly conveyed the views of the Subcommittee, asking rhetorically, "How many more studies are needed?"

The entire text of Jeff's testimony to the Veterans Affairs Committee is available here . Photographs taken during the hearing can be found via the links below:

Subcommittee Chairman John Hall and Jeff Faull;
Jeff with Congressman Henry Brown, sponsor of HR 5454; Jeff Faull delivers testimony to the House Veterans Affairs Subcommittee on Disability Assistance

The ALS Association Builds Support for HR 5454

During Thursday's hearing, we won the support of several Veteran Service Organizations who announced their support for HR 5454. They include the American Legion, Disabled American Veterans (DAV), National Association of State Directors of Veterans Affairs, Paralyzed Veterans of America (PVA), and Vietnam Veterans of America.

The ALS Association has been working with Members of Congress to build support for HR 5454. Thanks to the outreach of advocates during National ALS Advocacy Day, we have more than tripled the number of cosponsors of the bill in the House in just the past few weeks alone. We now have nearly 40 House cosponsors, up from just 11 before Advocacy Day!

The office of Congressman Henry Brown (R-SC), the sponsor of HR 5454 praised the effectiveness of our outreach in generating such rapid support in Congress. We are working closely to coordinate our efforts and advocacy strategies with Congressman Brown, and the Advocacy Department will provide additional information to the ALS community to let you know when your outreach can make the most difference.

Join the Roll Call of Veterans

Please continue to urge veterans with ALS to join our Roll Call of Veterans via our website here. In addition, if you have lost a veteran to this disease, send their name, branch of service and hometown to us at and we will add them to our Roll Call as well.

While we are reaching out to the Veterans Affairs Committee to continue to let them know the true magnitude of this disease in the military, we want to identify as many veterans as possible and keep those veterans active and engaged in our outreach to Congress. After all, our advocacy in support of HR 5454 must continue throughout the year if we are to realize success and ensure that veterans with ALS receive the benefits they deserve.

So please forward this alert to your entire address book. If you are with an ALS Association Chapter, please continue to share this and other Advocacy Updates with the ALS community in your area. Together we can continue to make a difference!

If you have any questions about this update or joining the Roll Call of Veterans, please contact the Advocacy Department at or 1-877-444-ALSA.

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