ALS community comes together in unprecedented fashion to urge Congress to pass critical access to disability benefits bill

For Immediate Release: Sep. 15, 2020

Media Contact: Theresa Garner, Theresa@iamals.org

Twenty ALS Advocate Groups Coordinate to Attain More than 360 Co-Sponsors in both the House and Senate.

WASHINGTON – This week, twenty ALS advocacy groups collaborated together to thank the more than 360 Congressional members from across the aisle who have co-sponsored H.R. 1407 and S. 578, which would extend Social Security Disability Insurance (SSDI) benefits for patients living with ALS. The ALS community is now calling on Congress for swift passage of H.R. 1407 and S. 578.

The legislation was introduced 19 months ago, but the coordinated campaign among local, regional and national ALS organizations drove progress in the past six months to attain Congressional support. The passing of the bill will provide ALS patients and their loved ones access to SSDI benefits without having to wait five months from the time of diagnosis – an eternity within the two-to-five-year life expectancy of the disease.

The effort was sustained by members of the ALS community who worked with Congress, including:

• ALS Hope Foundation
• ALS ONE
• Answer ALS
• Augie’s Quest to Cure ALS
• Brigance Brigade
• Compassionate Care ALS
• Every90Minutes Foundation
• Everything ALS
• Hope Loves Company
• I AM ALS
• Joe Martin ALS Foundation
• Les Turner ALS Foundation
• A Life Story Foundation
• Live Like Lou
• Muscular Dystrophy Association
• The Northeast ALS Consortium (NEALS)
• The Project ALS Therapeutics Core at
  Columbia
• Team Stevens Nation
• Team Gleason
• Your ALS Guide

The ALS community is grateful to each Representative and Senator supporting H.R. 1407 and S.578 during this critical moment for our nation. ALS is an enormous financial burden and it is crucial those living with ALS and their families have as much support as possible. Now, more than ever, it’s imperative Congress passes H.R. 1407 and S. 578 and sends it to the President’s desk for his signature.

About ALS
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, talk, breathe or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. ALS will affect 1 in 300 people in our lifetimes, and patients usually have no more than two to five years to live following diagnosis.