Supporting Our Veterans

ALS is called a rare disease. But for reasons yet unknown, veterans are twice as likely to be diagnosed with ALS as the general population.

That’s why we’re so grateful to work with organizations like the Paralyzed Veterans of America (PVA) to offer additional support to our veterans living with ALS.

Pictured here are of our two partners with the Paralyzed Veterans of America (PVA), Robert Statam, National Service Officer and Winston Woodward III, Senior Benefits Advocate at the Edward Hines, Jr. VA Spinal Cord Injury Center.

“PVA’s National Service Offices represent veterans with ALS and their dependents throughout the disease process and for life,” said Winston Woodard, III, Senior Benefits Advocate at the Edward Hines, Jr. VA Spinal Cord Injury Center.

The PVA works in coordination with our Support Services Team, making sure our veterans living with ALS receive VA benefits such as disability and caregiver compensation, grants for home and vehicle modifications, medications, supplies, home health care and equipment.

“In 2008, the Department of Veterans Affairs changed their benefits criteria to include ALS as a presumptive service-connected disease,” said Heather Ansley, PVA’s Associate Executive Director of Government Relations.

“Since the rule change, PVA’s national service officers and senior benefits advocates have represented around 11,000 veterans with ALS, and about 7,000 surviving spouses with claims for monetary benefits and quality health care. Claims filed on their behalf have resulted in $900 million in monetary and additional benefits.”

And further milestones for our veteran ALS community are on the horizon as well. 

The Senate Appropriations Committee has voted to double the Department of Defense ALS research funding for 2020 to $20 million! This is a huge victory and now puts ALS research funding on par with diseases like Alzheimer’s which received $15 million, and multiple sclerosis which received $16 million.

Several Foundation representatives, including Board Member Mary Lou Pisone, are members of the Congressionally Directed ALS Research Program.

“A funding increase of this magnitude means that many more researchers will be given the opportunity to find treatments and a cure for ALS. The more opportunities we can award to take aim at the target, the greater the likelihood of hitting the bullseye,” shares Mary Lou.

Alongside the monetary benefits, the PVA advocates for legislation affecting veterans with ALS and their families including the recently introduced “The Justice for ALS Veterans Act of 2019”. “This legislation would extend benefits to the surviving spouses and families of veterans who have passed away from ALS, regardless of how long their veterans had been receiving VA disability compensation for the disease. We will continue to reach out to as many eligible veterans and survivors as possible, and advocate on their behalf, in order to ensure they receive the benefits they deserve,” says Ansley.

Thank you to the PVA for all you do. But most of all, thank you to our brave veterans for your service!

In honor of Veterans Day, learn more about the extraordinary work of the Paralyzed Veterans of America>>

And learn more about the VA and ALS from this NEALS Webinar: An Overview for Veterans with ALS and Clinicians>>