House ALS Caucus Supports New Bi-Partisan Bill, “ACT for ALS”

For Immediate Release: June 5th, 2020

Media Contact: Kathleen Rooney, kathleen@iamals.org

Bill Provides New Hope in Fight Against ALS, Terminal Diseases Through Early Access to Promising Treatments

WASHINGTON – Today, the co-chairs of the House ALS Caucus, Representative Brain Fitzpatrick (R-PA-01), Representative Jason Crow (D-CO-06), Representative Terri Sewell (D-AL-07), and Representative Ken Calvert (R-CA-42), co-signed the bi-partisan bill Accelerating Access to Critical Therapies for ALS Act (ACT for ALS).

ACT for ALS will create an infrastructure to fund early access to promising therapies for patients suffering from fast-progressing, terminal diseases like ALS.

ALS will affect 1 in 300 people in our lifetimes, and patients usually have no more than 3 years to live following diagnosis; they don’t have years to wait for new treatment options. Access to promising therapies in a matter of months is a game-changer and potentially a lifesaver.

“ALS is a disease that affects our loved ones with no racial, ethnic, gender or socioeconomic boundaries. We are at a critical point in which the path towards treatments and cures for ALS is possible. I am hopeful this legislation, which will help ALS patients get early access to emerging therapies, will help us find a cure for this debilitating disease,” said Representative Terri Sewell.

“We launched the ALS Caucus in June of 2019 to raise awareness about the challenges faced by ALS patients and their families, think creatively about policy solutions to reduce the negative impacts of ALS, and invest in groundbreaking research we will need to find cures,” says Representative Brian Fitzpatrick. “Supporting this bill is a critical step forward in keeping our promise to the ALS community and moving ever closer to treatments and cures.”

ACT for ALS, originally introduced by Representative Jeff Fortenberry (R-NE-01) and Representative Mike Quigley (D-IL-05), will make $75,000,000 available in FY 2021 and 2022 for a pilot program to support expanded access programs. It will bring treatments for rapidly progressing neurodegenerative diseases to patients beyond the ongoing clinical trial and establish a Center of Excellence for Neurodegenerative Diseases at the FDA to accelerate the development and approval of therapies for the coming tide of neurodegenerative diseases that will cause a health and economic crisis in the coming decades.

“The fact that more than 5,600 Americans are diagnosed with ALS each year with no known cure shows that more research and funding is needed to tackle this disease. Fortunately, the ACT for ALS Act provides the infrastructure essential to help rewrite the ALS story,” says Representative Jason Crow. “We urge members of the House ALS Caucus to join us in supporting this bill.”

“What many don’t know is that when we find a cure for one of the fastest progressing neurodegenerative diseases, like ALS, we will unlock critical breakthroughs for other diseases like Parkinson’s, Alzheimer’s, Frontotemporal Dementia and beyond, which affect 50 million Americans each year,” says Representative Ken Calvert. “This legislation will begin by making a huge impact in the fight against ALS but if successful, grow to make transformative change across the neurodegenerative disease fight.”

“We have to continue to move with urgency – at ALS speed – to make a real difference against this disease and so many others that devastate lives and families. We have incredible champions in the Congressional ALS Caucus and particularly in our House ALS Caucus co-chairs.  Their support of this legislation is a critical next step to making real, tangible change to accessing promising ALS treatments, to providing real hope,” says Danielle Carnival, CEO of I AM ALS.

Click here to take two minutes and ask your Representative to sign on in support of this bill.

Click here to read the text of the bill (H.R. 7071).


About I AM ALS

Founded in 2019 by husband and wife team Brian Wallach and 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. Learn more here: https://www.iamals.org

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, breathe, or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them.

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