Advocacy

Hawaii Governor Proclaims May as ALS Awareness Month

May 16, 2024 Comments Off on Hawaii Governor Proclaims May as ALS Awareness Month

The ALS Network is grateful to our ohana on the islands for their continuing efforts to raise ALS awareness throughout ALS Awareness Month. Our ALS families on the island gathered…

2024 National Advocacy Event – Participate Virtually

May 2, 2024 Comments Off on 2024 National Advocacy Event – Participate Virtually

Join the ALS Network for I AM ALS’s inaugural Community Summit and third annual DC ALS Awareness Event. While in-person attendance options are now fully booked, you can still participate…

ALS organizations collaborate, advocate for FY25 Congressional funding

March 5, 2024 Comments Off on ALS organizations collaborate, advocate for FY25 Congressional funding

The Honorable Patty MurrayChairSenate Committee on AppropriationsS-128 The CapitolWashington, DC 20510 The Honorable Kay GrangerChairHouse Committee on AppropriationsH-307 The CapitolWashington, DC 20515 The Honorable Susan CollinsVice ChairSenate Committee on AppropriationsS-128…

Awareness and Advocacy Reunites an ALS Family

December 4, 2023 Comments Off on Awareness and Advocacy Reunites an ALS Family

After over three years apart, a California family facing ALS  has been reunited, thanks to the efforts of ABC Bay Area’s Michael Finney/On Your Side and Congressman Jimmy Panetta.  Lou…

Celebrating the Life and Legacy of Health Care Activist Ady Barkan

November 3, 2023 Comments Off on Celebrating the Life and Legacy of Health Care Activist Ady Barkan

A true hero and activist personified, Ady Barkan made an enduring impact on the ALS community that will live on through his significant contributions to healthcare reform. Once described as…

Advocacy Update – California Assembly Bills

October 12, 2023 Comments Off on Advocacy Update – California Assembly Bills

We are excited to share that California Governor Gavin Newsom recently signed ALS Golden West’s two bills into law, ensuring more support and funding for the ALS community. This is…

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…