U.S. military Veterans are up to twice as likely as civilians to have ALS—and researchers still do not know why.

The answer to this question could help identify what causes ALS, accelerate the development of treatments and a cure, and prevent a disproportionate number of Veterans from developing ALS in the future.
To help solve this mystery, more Veterans need to participate in ALS research. “I help with ALS research so future Veterans can have a better life,” says Ron Faretra, Veteran living with ALS. “I do what I do not for me but for those behind me."
"We need you in our quest to find a cure for ALS! Veterans are more likely to be diagnosed and yet are not equally represented in research. Veterans are the best group of volunteers that this country has. Please help us unlock this mystery by participating in a study that best fits you. You've selflessly served our country before—and we are asking you to do it again."

– Jill Brattain, Surviving wife of Veteran who died from ALS
Veterans often express interest in participating in research, but do not know how or where to start. ALS clinic teams can be so focused on providing quality care and connecting Veterans with benefits that they do not bring up the topic of research. This means that if you are interested, you may need to tell your neurologist that you want to participate in research.
Ideally, someone on your clinic team can guide you and discuss research opportunities that are either in your area or can be done remotely. If not, you will need to be proactive and search for opportunities yourself.

The VA has made significant contributions to ALS research, but there are few actual research opportunities for Veterans that take place within the VA. This means that you will likely need to find ALS clinical trials and observational studies outside of the VA.
You can apply for trials and studies that are enrolling anyone who has been diagnosed with ALS. You do not need to search for opportunities that are specifically for Veterans.

Clinical Trials

Clinical trials test whether an experimental drug or treatment will be effective for a particular group of people. You should not have to pay to participate in clinical trials, though travel expenses and other costs may be involved. Participation is voluntary, and you may stop at any time.

Most ALS clinical trials require frequent in-person research visits to places like hospitals and medical centers. This means you may want to find a clinical trial that is either near you or at a location you will be able to travel to for the duration of the trial.

Generally speaking, your chances of being eligible for a clinical trial are higher earlier in your disease progression. If you are interested in clinical trials, it is best to apply as soon as possible after your diagnosis.

To learn more about clinical trials and how to search for them, visit our Clinical Trials page.

Observational Studies

Observational studies are one of the most important ways Veterans can help advance ALS research. In observational studies, you do not take an experimental drug or treatment. Instead, researchers observe you and collect information through online surveys, in-person exams, blood draws, and other means.

Eligibility criteria for observational studies are generally more inclusive than they are for clinical trials—and observational studies often enroll large numbers of participants. If you want to participate in an observational study, you should be able to find one and enroll.
“If not me, then who? I believe in scientific research and I am astonished by what is still unknown about the disease.”

– Randy Viscarra, Veteran living with ALS
Here are three observational studies that may be of particular interest to Veterans:
Champion Insights is a fully remote study that seeks to better understand why certain populations—such as military personnel, first responders, and high-performing athletes—are diagnosed with ALS at higher rates than the general public. Researchers are looking to uncover the genetic, environmental, and lifestyle factors that contribute to this elevated risk and believe that findings can inform broader ALS research.
The ​National ALS Registry is a CDC program that collects information from people living with ALS so researchers can better understand potential risk factors and identify areas for future research. Participation involves filling out surveys about occupational and environmental risk factors such as past military service, work history, physical activities, and family history.​
The VA Million Veterans Program (MVP) is a national research program that looks at how genes, lifestyle, military experience, and exposures affect health and wellness in Veterans. This program is not ALS-specific, but researchers are looking into ways to study and compare data from ALS and non-ALS participants.
To learn more about observational studies and how to search for them, visit our Observational Studies page.

Tissue Donation

People living with ALS can help advance research by donating their brain and spinal cord upon death. One donation provides enough samples for hundreds of ALS research studies. 

Tissue donations are extremely valuable because they give researchers the ability to look directly at the brain, spinal cord, and affected motor neurons—something that is not possible while a person is alive.
“Brain and spinal cord donation is one of the best ways Veterans can participate in the search for a cure and help solve the mystery of ALS. Tissue samples are shared with any research facility that requests them.”

– Ron Faretra, Veteran living with ALS
If you think you might want to donate your brain and spinal cord to ALS research, you will need to start planning ahead as soon as possible. Coordinating logistics takes time—and tissue donation cannot typically be arranged after death.

The VA has an ALS Biorepository Brain Bank where any Veteran with ALS or ALS-related conditions can enroll. There is also a need for healthy volunteers without ALS.

Advocacy and Engagement

Whether or not you participate directly in ALS research, you can help advocate for Veterans research and related causes.
The Veteran ALS Action Committee at the ALS Hope Foundation is a volunteer group of advocates, caregivers, and Veterans dedicated to increasing Veteran awareness of and participation in clinical trials and research through education and outreach. It coordinates an annual two-day training called the Veterans Clinical Research Learning Institute (VCRLI) that empowers Veterans and caregivers to be advocates and valued contributors to  ALS clinical research.
The Veterans Team at I AM ALS is a volunteer committee that seeks to raise awareness about veteran-specific ALS issues, educate the public, connect veterans with resources, and accelerate the development of and access to treatments and cures.

Additional Resources

  • The VA ALS System of Care page on the VA website explains how and where Veterans diagnosed with ALS can access care through the VA.
  • For general information on Veterans benefits and more, visit our Veterans page.

ALS RESEARCH GUIDE

Partners and Collaborators