Larry Falivena Named Chair of the ALS Association Board of Trustees

Falivena is Second Person Living with ALS Elected Chair Since Ice Bucket Challenge

ARLINGTON, Va., June 17, 2025 /PRNewswire/ -- The ALS Association is proud to announce that Larry Falivena has been named Chair of the Board of Trustees. Falivena, who was diagnosed with ALS in 2017, brings lived ALS experience, proven leadership, and a longstanding commitment to the ALS community to this role.

"I'm honored to step into this role and help guide the ALS Association's work at such a critical time in the fight against ALS," said Falivena. "The recent advancements in treatments that have been made possible, in part, by research grants from the ALS Association, have given me more time with the people I love. I want that for every person living with ALS."

Falivena has served on the Board of Trustees since 2020, offering valuable perspective as a professional with two decades of experience at Salesforce, where he helped mission-driven organizations. He holds a Bachelor of Science in advertising and public relations from Florida Southern College and lives in Apex, North Carolina, with his wife and two sons.

"Larry's dedication, advocacy, and compassion will help us advance our mission of making ALS livable and curing it," said Calaneet Balas, president and CEO of the ALS Association. "We are blessed to have a person living with ALS serve as Chair of our Board. He has already brought so many insights as a Board member and we are excited for his leadership."

In 2019, Falivena launched the "Iron Horse Tour," a nationwide awareness and fundraising campaign during which he visited all 30 Major League Baseball stadiums. Along the way, he met with people living with ALS and their families across the country, sharing stories, raising awareness, and advocating for a future without ALS. His journey was featured in local and national media and continues to inspire the ALS community.

The ALS Association also extends its deepest gratitude to Scott Kauffman, who is stepping down after three years of dedicated service as Chair. Kauffman continues to serve as caregiver to his son, who was diagnosed with ALS in 2012. Under Kauffman's leadership, the ALS Association advanced critical research, expanded care services, and championed public policy wins that benefit people living with ALS nationwide.

"Scott worked tirelessly to advance our mission while also caring for his son," said Balas. "He brought grace and wisdom to the role and we are grateful for his many years of service – and that he will continue on as Immediate Past Chair."

The Board of Trustees also elected -- Nancy LeaMond as Vice Chair and Stephen Hanon as Secretary. Mark Stancil will continue as the Board's Treasurer.

For more information about the ALS Association's leadership team, visit https://www.als.org/about-us/leadership/board-trustees.

About ALS

ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are more likely to develop ALS than the general population.

About the ALS Association

The ALS Association is the largest philanthropic funder of ALS research in the world. The Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at als.org.

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SOURCE The ALS Association