Quigley Hosts Briefing on State of ALS Research

Today, U.S. Representative Mike Quigley (IL-05) hosted a group of neurological disease experts to highlight research and care for ALS. The briefing featured perspectives from a person living with ALS, health care providers serving people with the disease, and top research experts in both government and the private industry. ALS remains a 100% fatal disease, but recent advances in the field bring us closer than ever before to understanding the causes and possible treatments.

In 2021, Quigley led the passage of the Act for ALS which funds neurodegenerative disease research and early access to clinical trial therapies for patients with fast-progressing neurodegenerative and terminal diseases including ALS. This bill, signed into law by President Biden in December 2021, is helping people living with this cruel disease access promising treatments and create the research infrastructure that could put a cure within reach.

To watch a full recording of the briefing, click HERE.

Quigley’s opening remarks as prepared for delivery are below.

Good afternoon everyone, thank you for being here.

I’d like to take a moment to thank our panelists. 

I look forward to hearing about your experiences and the important work you are doing to advance care and treatment for ALS.

I’d also like to thank the ALS Caucus, and especially the co-chairs: Reps. Ken Calvert, Jason Crow, Brian Fitzpatrick, and Terri Sewell. 

I am honored to serve on the ALS Caucus with you. 

Now, I’ve been looking forward to this event for months. 

On days when I get bogged down in the biting politics and bad-faith rhetoric of Washington, I think of this community.

Just a little over two years ago, we came together in an overwhelming majority to pass the ACT for ALS.

In one of the most polarized and partisan eras of politics, Congress took vital steps to advance research and access to new treatments for ALS.

And that’s because of the advocacy of people living with ALS and their friends and family. 

I am encouraged by ALS advocates’ courage to think big.

I am encouraged by their dedication and tireless advocacy.

And I am encouraged by the bipartisan, bicameral coalition they built to advance these causes. 

The fact of the matter is that ALS is a terrible disease, 

But the work that we’ve advanced with our government and private industry partners will change the future of this disease.

Today we’ll hear about some of the progress made in treatment and care for ALS.

I encourage all those watching here or at home to keep in mind that this progress is because of the ALS community and their allies. 

We’ll also hear about some of the remaining challenges facing the community.

I hope that these updates serve as a reminder of the work we have left to do. 

I look forward to continuing my partnership with the community and the agencies represented here today to take those challenges head on.

To the physicians and other medical staff here, thank you for your work caring for people with ALS and advancing research on this disease. 

And to the advocates here, keep up the good work.