ALS community launches campaign urging Congress to pass critical access to care disability bill

For Immediate Release: Aug. 11, 2019

Media Contact: Theresa Garner, Theresa@iamals.org

16 ALS Advocate Groups Urge Swift Passage Of SSDI Early Benefits Legislation In The U.S. House And Senate

WASHINGTON – This week, I AM ALS announced the start of a coordinated, widespread campaign aimed at thanking members of Congress who have co-sponsored legislation to extend early Social Security Disability Insurance (SSDI) benefits for patients and their families living with Amyotrophic Lateral Sclerosis (ALS).

“This bill will change the lives of ALS patients and their families,” said Brian Wallach, founder of I AM ALS. “ALS is an enormous financial burden, which is why it’s crucial we have as much support as possible. Removing the five-month waiting period will allow much-needed help for those who are in the fight against ALS. The ALS community is grateful to each Representative and Senator supporting this legislation and will not forget their leadership. Together, we’re building a movement to cure ALS.”

In its first week alone, over 30 lawmakers were thanked by 16 ALS advocacy organizations, each committed to fighting for patients with ALS and their families to be able to access SSDI without having to wait five months – an eternity within the two-to-five-year life expectancy of the disease. Next week, close to 40 lawmakers will be thanked, and by end of the campaign, organizations and advocates across the country will publicly thank the 179 members of Congress who support H.R. 1407 and S.578, the companion bills removing the five-month waiting period.

Additional organizations coordinating the campaign include:

• ALS Association
• ALS Hope Foundation
• ALS One
• ALS Therapy Development Institute (TDI) 
• Answer ALS
• Augie’s Quest
• Compassionate Care ALS
• Every 90 Minutes Foundation
• Hope Loves Company
• I AM ALS
• Joe Martin ALS Foundation
• Les Turner ALS Foundation
• Muscular Dystrophy Association
• Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium 
• Project ALS
• Sean M. Healy & AMG Center for ALS
• Target ALS
• Team Gleason
• The Packard Center

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About I AM ALS

Founded in 2019 by Brian Wallach and his wife, Sandra Abrevaya, I AM ALS was born out of their desire to change the future for Brian and the thousands of other ALS patients in the world. I AM ALS brings together patients, advocates, organizations and scientists to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for a cure, and transform the public understanding of ALS with a goal of flooding the research pipeline with new, lifesaving drugs. A cure is possible … if we work together to re-imagine the fight against ALS.