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.”

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.

In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.

Peter Sawyer of Mechanicsburg, PA is a military veteran and has been living with ALS for five years. He and his wife and caregiver, Lura, are tireless advocates for The ALS Association’s mission and exemplify true ALS heroes.

In 2016, Troy Fields had everything going for him. A beautiful and growing family. A highly successful and satisfying career that allowed him to travel internationally. But he also started to notice signs that something wasn’t quite right. After treatment for cancer and a battery of other tests, his ALS diagnosis was eventually confirmed. Instead of focusing on what he was going to lose, Troy opted to channel his energies to be an agent of change for the ALS community.

With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?

On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.

At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.

Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.

The ALS community recently presented its recommendations to the U.S. Food and Drug Administration (FDA) regarding the Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry at a day-long event, called ALS Community Workshop: Therapy Development and Regulatory Pathways, which was held in Washington, D.C., on July 12. Over 90 people attended in person, with many more tuning in online.