What if I told you there was a fatal disease that anyone could get, but that, for some unknown reason, you were twice as likely to develop if you had been a member of the military?
Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease that afflicts nerve cells in the spinal cord and brain, causing patients to eventually lose all control over their physical faculties, leaving their unaffected mind trapped in a body they can’t use. In every case, ALS is fatal.
Here’s a bit more perspective from the ALS Association: “If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military.”
In 2017, my friend Brian Wallach was diagnosed with ALS. He was 37 years old, the father of two young daughters, building a life in Chicago with his best friend and wife, Sandra. Brian was never in the military, but he has lived a life of service. At the time of his diagnosis, he was working as federal prosecutor focusing on gangs and violent crime, and had done stints as a White House lawyer and as an organizer on Barack Obama’s 2008 campaign.
I’ve worked with people from across the spectrum of service, from the military to government to law enforcement to philanthropy to politics, and if they have one thing in common beyond their commitment to helping others, it is a bias towards action. What felt like a gut punch to Brian’s friends and family, he saw as a call to action. It was the opening bell of a new fight, not the final round.
On Tuesday, Brian and Sandra launched a new organization aimed at using their skills, networks, and labor to find a cure for this disease. I AM ALS aims to bring to the fight the best thinking from the worlds of organizing, fundraising, and advocacy.
Why do we need an organization like I AM ALS? The harsh reality is that most Americans know next to nothing about this horrible disease; even 2014’s viral Ice Bucket Challenge only went so far in raising awareness. The most basic facts remain elusive: a recent I AM ALS/Ipsos poll found that more than 60 percent of your fellow citizens don’t know that ALS is always fatal. As long as the disease remains a mystery, we won’t have the funding we’ll need to find a cure.
Why should the defense community care? There are plenty of causes that could use our support, plenty of organizations doing good work.
Around 6,000 people in the United States are diagnosed with ALS each year. About one out of six of them have served in the military. Just think about that: a thousand teammates, a thousand leaders, a thousand men and women who serve or have served our country, every year, are stricken with what is today a death sentence. The human and mission-related costs of ALS are real and they are steep. An average year of care can cost north of $300,000 per patient, not to mention the lost value to our military when sailors, soldiers, airman, Marines and Coast Guardsmen are felled by the disease.
Even worse, we don’t know why those in uniform bear an outsized burden from this disease. There are many theories behind the unusually high rates of ALS in the military, but today they are just that—theories. Some believe it is rooted in the extreme physical exertion that comes with military service. Others point to the higher chance that military members are exposed to lead, pesticides, and other toxins. (But the bottom line is we just don’t know—and that without more research we won’t be able to intervene.
I AM ALS is bringing people together to answer these questions and to cure ALS. It is building a patient-led, patient-centric movement that identifies and works with key partners, empowers patients and their networks to fight for a cure, and that is doubling down on transforming the public understanding of ALS. All of these steps are aimed at priming the pump so that we can flood the research pipeline.
But movements are built on people, so they need our help.
If you work for a Veterans Service Organization, a Military Association, or any other relevant advocacy organization, we need you in this fight. I AM ALS is working overtime to bring together groups from different backgrounds that are affected by this disease. Only through cross-sector, cutting-edge collaborations can we marshal the resources we need to stop this disease. Reach out to —they are ready to partner.
If you work for a member of Congress, or work the VA or DOD on issues surrounding medical care, we need you in this fight. We need more research dollars coming from the pieces of government that directly support the part of our society that most feels the impact of ALS, and I AM ALS is ready to help educate you and your bosses on where research dollars can make the biggest impact.
If you are a member of the military or a veteran who has had a buddy or teammate down by ALS, we need you in this fight. They may sound like small actions, but spreading the word is a fundamental step towards finding a cure. Tweet, post to Facebook, talk to your colleagues and neighbors. Too often ALS exists in the shadows, and those afflicted pass so quickly they can’t speak for themselves. Be their voice. Visit www.iamals.org to join the fight.
As my friend Brian has said, “ALS is a disease that turns your body against itself, making you feel crushingly alone. Defeating it requires coming together.” With one-sixth of ALS cases coming from the defense community, we can’t afford to be on the sidelines.