ALS Association chapter executives from across the country held more than 250 meetings with members of Congress Wednesday as part of the Association’s annual “fly in” advocacy push. While the meetings generally occur in-person in Washington, D.C., this year’s discussions shifted to virtual platforms in response to the ongoing COVID-19 pandemic and emerging social distancing and shelter in place rules across the country.
It’s going to take all of us working together to make ALS a livable disease and ultimately find a cure. And it will take people like YOU. Whether you have a personal connection to ALS or just want to help make a difference for families impacted by the disease, becoming an advocate is easy.
Recent studies point to a possible connection between ALS and chronic traumatic encephalopathy (CTE), the type of traumatic brain injury associated with playing football and other contact sports. NFL veterans Steve Gleason, Tim Shaw, O.J. Brigance, Dwight Clark, Kevin Turner, and others were diagnosed with ALS after their football careers ended. CTE has also been found in military veterans, who are twice as likely to be diagnosed with ALS.
As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.
Meet Shelly Hoover. Shelly is a wife, mother, grandmother, daughter, sister, friend, educator, Giants baseball fan, military veteran and ALS advocate. When you meet Shelly, there are two things that immediately become apparent, her joy for life and her passion for working to advocate for people with ALS. Her accomplishments are many. Since her diagnosis, she has volunteered, advocated and fundraised tirelessly. She and her family are why we fight for a cure!
The National Academies of Sciences, Engineering, and Medicine (NAS) is undertaking a study into accelerating the development of treatments and improving quality of life for people with ALS. This is a huge win for the community. The ALS Association led an effort to get Congress to direct NAS to undertake a study on ALS and also fought for $1 million to fund the study.
In 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing, vehicle modifications and much more. A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones.