Congressional Testimony For Vets With Als

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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.

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Please tell me what ALS means.

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What is Amyotrophic Lateral Sclerosis?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost. Individuals with ALS lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, individuals lose the ability to breathe without ventilatory support. The disease does not affect a person's ability to see, smell, taste, hear, or recognize touch, and it does not usually impair a person’s thinking or other cognitive abilities. However, several recent studies suggest that a small percentage of patients may experience problems with memory or decision-making, and there is growing evidence that some may even develop a form of dementia. The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.

Is there any treatment?

No cure has yet been found for ALS. However, the FDA has approved the first drug treatment for the disease—riluzole. Riluzole is believed to reduce damage to motor neurons and prolongs survival by several months, mainly in those with difficulty swallowing. Other treatments are designed to relieve symptoms and improve the quality of life for people with ALS. Drugs also are available to help individuals with pain, depression, sleep disturbances, and constipation. Individuals with ALS may eventually consider forms of mechanical ventilation (respirators).

What is the prognosis?

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals have increasing problems with moving, swallowing, and speaking or forming words. Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms. In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.