Each year, the Hero Awards recognize special people in the ALS community who have made a significant impact for those living with the disease. People like Katie Adams, who knew she wanted to do something to help others with ALS but wasn’t sure how, until it just “landed in my lap.”

August is Advocacy Action Month for ALS advocates—an opportunity to push for changes in policies that affect the lives of people living with ALS, and we want you to join us! Learn some quick ways you can get involved and help make real change for the ALS community.

The surge in awareness we saw from the Ice Bucket Challenge helped us to make great strides in ALS advocacy. From new policies to help with care and support for families impacted by the disease, to tremendous increases in governmental funding for ALS research, we’ve seen great progress. But we still have work to do and need your help.

After being the primary caregiver to his wife of 30 years before she passed away from disease in 2021, Bob Scott wasn’t sure he ever wanted to have anything to do with the letters “ALS” again. But a burning in his gut told him that he should do something to help; that he could try and make it all a bit more “fair.”

A proposed new Department of Transportation (DOT) rule, spearheaded by Transportation Secretary Pete Buttigieg, aims to address the issue of air travel for passengers who rely on wheelchairs, including people living with ALS.

This month, Calaneet Balas, ALS Association President and CEO, and Scott Kauffman, Association Board Chair, joined several board members with ALS and some who have lost loved ones to the disease to meet with members of Congress in House and Senate leadership positions and participate on appropriations committees that will decide how federal dollars are to be spent.

To help educate the public and raise awareness of the growing issues people with ALS and their families struggle with, ALS Association CEO Calaneet Balas recently shared her views about insurance denials in an op-ed published by the International Business Times, specifically relating to the use of ventilators and assistive technology.

"I feel the more people that use their voices, the more attention we will bring to ALS, and the closer we will be to finding treatments and one day at a cure." Katie Adams is an advocate for people living with ALS, like herself.

Gerald McCormick, a Gulf War veteran and former state legislator, used his connections and experience to join The ALS Association team of advocates and share his story.

The ALS Association sent formal responses to Blue Cross Blue Shield of Illinois, New Mexico, Texas, Oklahoma, and Montana challenging their draft policies regarding coverage of Qalsody, approved by the FDA earlier this year for treatment of people living with ALS caused by the SOD1 gene mutation.

August is ALS Advocacy Action Month, an opportunity for you to join with other advocates in your own home state and push for changes in policies that affect the lives of people with ALS. Throughout this month, advocates will share their personal experience with ALS and urge members of Congress to increase funding of critical research to find new treatments and a cure.

In August, ALS advocates across the country will be meeting with members of Congress in their home district offices, pressing for public policies that will make ALS livable while accelerating the search for new treatments and ways to cure the disease. Learn more about Advocacy Action Month and how you can get involved to help the ALS community.

We spoke with Kara Nett Hinkley, national vice president of state policy at The ALS Association and member of the National Association of Insurance Commissioners' Consumer Advisory Board, to discuss some of the important work being done to break down barriers to accessing health care.

As an occupational therapist, Katie Adams had a keen sense of what was happening to her body when her ALS symptoms first started and was pretty sure she knew why. Little did she know her intuition would not only prove to be correct but would lead her to fighting for access to the care and equipment she needed just to live.

Health insurers can play a critical role in making ALS livable for everyone, everywhere, but all too often barriers are erected that prevent people from accessing the health care services they need. We discuss the different barriers families affected by ALS have to face and The ALS Association's fight alongside them.

The Hero Award is the highest honor given by The ALS Association. Each year, we recognize people living with, or who have lived with, ALS who have made a significant impact in the fight against the disease. This year’s honorees—Patrick Dolan, Steve Kowalski, Joel Shamaskin, David Tomassoni—have all made a lasting impact for the ALS community.

Jessy Ybarra’s journey with ALS began in 2015, at the age of 51. Like most he struggled with this diagnosis at first. Then he realized that while he couldn't control his ALS, he could take control of his LIFE with ALS, so he created what he calls his ‘aliveness list'—a future he could live INTO.

It is always gratifying when hard work pays off, and for the ALS community, there have been many policy wins to celebrate recently. These successes are the direct result of the efforts of more than 40,000 ALS advocates across the country, working tirelessly with The ALS Association to make an impact for people living with the disease.

The FDA announced it has granted accelerated approval to tofersen, a treatment for people living with mutations of the SOD1 gene. This is a significant victory for the ALS community and our efforts to make ALS livable for everyone, everywhere, until we can cure it.  

ALS volunteers and leading advocates held more than 200 meetings with members of Congress and their staff during The ALS Association’s virtual fly-in event on April 19, focused largely on securing increased federal funding for ALS research. Advocates from across the nation made over 250 calls to their members of Congress to support our appropriations requests.