Veterans campaign to end ALS, a disease they are twice as likely to develop

Norman Jones, Juan Reyes, Yvette Marie Wilson, Guill Garcia, and Matt Bellina all once fought for our country. Now they are fighting for their lives because of a terminal disease called Amyotrophic Lateral Sclerosis (ALS).

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They are not alone. If you served in the military, you are much more likely to develop ALS. The numbers are stunning--1 in 6 ALS patients have served in the military. It doesn't matter which branch you come from, or if you served in combat--and we have no idea why.

ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies, unable to eat, breathe, or move on their own. In every case, ALS is fatal.

The disease can affect anyone, and 90 percent of patients have no family history, so when Jones, Reyes, Wilson, Garcia, and Bellina were all told they had ALS they were blindsided. Anyone who has ever put on the uniform knows that, when you serve, your family serves, too. You can't do it alone. Fighting ALS is the same. They knew that as their condition progressed and they began to lose control of their bodies, the support from the people around them would have to grow.

No one needs to tell a veteran that you don't stop serving just because you take off the uniform--once in the military, always in the military. Tapping into their sisters and brothers in arms, these five veterans are activating their community not only for their own personal support but for the bigger fight -- to build an army of advocates that can change how the ALS story ends.

One of the biggest hurdles faced in the fight against ALS is awareness. Earlier this year an I AM ALS/Ipsos poll uncovered that, even in the aftermath of 2014's viral ALS Ice Bucket Challenge, awareness about the disease remains very low. The majority of Americans, including members of the military, still know nothing about ALS.

Instead of retreating after receiving devastating news, these advocates banded together with veterans from across the ALS community to launch a campaign with the patient-led, patient-centric organization I AM ALS to raise awareness about the thousands of men and women who serve or have served our country affected by ALS every year.

I AM ALS, founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, was born out of a similar desire to change the future for all ALS patients by activating people and building a movement that empowers and mobilizes patients to lead the fight for cures. Since its launch in January 2019, I AM ALS has already built a community of 25,000 people including patients, advocates, organizations and scientists to deliver critical and innovative resources.

They are fighting for patients every day, including the veterans community. The organization is leading an advocacy effort that this year resulted in the House of Representatives and Senate Appropriations Committees voting to double Department of Defense funding for ALS research from million to million. These funds will help us finally understand why those who serve are so much more likely to be afflicted by ALS, and understanding is a giant step towards finding a cure.

This is an incredible win for all ALS patients. Especially given that recent acceleration of research has ensured that it is no longer a question of if, but when there will be a significant treatment breakthrough that brings a cure within reach.

Even with the recent successes, there is still a necessary urgency to expand and accelerate this progress. ALS patients typically live two to five years after diagnosis, so time is always of the essence. Your help is needed to support members of the military community fighting this disease today.

We need you in this battle because it will only be won if we work as one.

You can start pitching in today by joining with these brave men and women to spread the word about ALS. If you have a story about a teammate affected by ALS, reach out and let us know. These may sound like small actions, but spreading the word is a fundamental step towards finding a cure. Share this video using #VetsFightALS, talk to your colleagues and neighbors, and get engaged at iamals.org/action. We need you in this fight.