Advocacy

Opportunity to submit comments to FDA about NurOwn

September 8, 2023 Comments Off on Opportunity to submit comments to FDA about NurOwn

On Wednesday, September 27, 2023, the FDA will host a public advisory committee meeting (AdComm) for BrainStorm Cell Therapeutics’ stem cell therapy NurOwn for the treatment of ALS.  The public…

Meet Jim Obergefell, ALS Advocate

July 20, 2023 Comments Off on Meet Jim Obergefell, ALS Advocate

Before 2011, Jim Obergefell knew very little about ALS until his partner of 21 years, John Arthur, was diagnosed with the disease. Living in Ohio, they connected with the Central…

He was diagnosed with ALS. Then they changed the face of medical advocacy

June 30, 2023 Comments Off on He was diagnosed with ALS. Then they changed the face of medical advocacy

On a recent crisp June night, as the Chicago Cubs prepare to take on the Pittsburgh Pirates, fans dressed in blue pack Wrigley Stadium’s famous bleachers. Sitting in his wheelchair,…

Remembering a historic day in the US Supreme Court

June 16, 2023 Comments Off on Remembering a historic day in the US Supreme Court

It was on June 26, 2015, that the U.S. Supreme Court made a landmark decision on marriage equality when they ruled that the Constitution guaranteed a right to same-sex marriage…

Important Update on Insurance Denials by Cigna and Others of Drugs Approved to Treat ALS

May 11, 2023 Comments Off on Important Update on Insurance Denials by Cigna and Others of Drugs Approved to Treat ALS

We continue to press Cigna to reverse course and make Relyvrio treatment available for people living with ALS on Cigna plans. While Cigna initially revised its policy, those changes were…

Public Comments Filed on Rules to Improve Medicare

April 18, 2023 Comments Off on Public Comments Filed on Rules to Improve Medicare

The ALS Association recently submitted a series of regulatory filings to reduce administrative burdens placed on people living with ALS. The filings are in support of administrative rule changes at…

The Golden West Chapter Congratulates the 2023 Sheila Essey Award for ALS Research and the Richard Olney MD, Clinician-Scientist Development Award Recipients

April 7, 2023 Comments Off on The Golden West Chapter Congratulates the 2023 Sheila Essey Award for ALS Research and the Richard Olney MD, Clinician-Scientist Development Award Recipients

Since 1996, the Sheila Essey Award for ALS Research  has been presented to acknowledge and honor an individual who is making significant contributions and breakthroughs in the search for the…

Brandon Crawford of the San Francisco Giants Wins Phi Delta Theta Fraternity’s Lou Gehrig Memorial Award

March 26, 2023 Comments Off on Brandon Crawford of the San Francisco Giants Wins Phi Delta Theta Fraternity’s Lou Gehrig Memorial Award

Brandon Crawford of the San Francisco Giants has won this year’s Lou Gehrig Memorial Award, sponsored by the Phi Delta Theta International Fraternity, headquartered in Oxford, Ohio. Phi Delta Theta…

Congressional “Dear Colleague” Letter Circulated to Increase Federal Funding for ALS

March 16, 2023 Comments Off on Congressional “Dear Colleague” Letter Circulated to Increase Federal Funding for ALS

The U.S. House and Senate are preparing legislation that determines how much will be spent on research. It’s important that ALS research requests are at the top of the “must…

ALS Association Calls on CIGNA to Reverse Course and Make Relyvrio Available

February 9, 2023 Comments Off on ALS Association Calls on CIGNA to Reverse Course and Make Relyvrio Available

The ALS Association filed a formal objection to health insurer CIGNA for the company’s decision to exclude Relyvrio from its formulary as part of our continued fight to ensure access…