Our Impact in 2025
For more than 30 years, ALS United Greater New York’s work has been shaped by local families, caregivers, clinicians, advocates, volunteers, and supporters who believe no one should face ALS alone. ALS United is not just a support organization, but rather we are your family of support built on experience, trust, and care. Our local care professionals provide comprehensive, compassionate support that evolves as needs change, a commitment strengthened in 2025 with the launch of The Tom and Jill Pulley Mental Health and Wellness Program.
Because of your generosity, 2025 was a year of meaningful progress across our mission. Care Services continued to grow alongside the increasingly complex needs of individuals and families, while education and connection remained central. Families came together through the 5th Annual Education and Resource Summit, Hudson Valley and Long Island Family Connection events, and throughout the year, ongoing support that ensured trusted information and a caring connection were always within reach.
Your engagement also fueled advocacy, research, and awareness efforts that extended our impact. Together, we helped pass ALS registry legislation in New York and New Jersey, ensuring more accurate data collection of ALS to inform research, resources, and care, and elevated visibility through Lou Gehrig Day at New York ballparks, ringing the opening bell at the New York Stock Exchange, and ALS Awareness Month messaging in Times Square. Fundraising milestones—including $1.3 million raised through WALK ALS and more than $640,000 from our endurance events—supported care, research, and advocacy, culminating in the Lou Gehrig Legacy Gala, which raised more than $1 million as we honored Tom Pulley, Kasper Roet, PhD, Sarah Langs, and Gerrit Cole, and celebrated the collective commitment that makes our work possible
The Tom and Jill Pulley Mental Health and Wellness Program
In 2025, ALS United Greater New York launched THE TOM AND JILL PULLEY MENTAL HEALTH AND WELLNESS PROGRAM. This innovative program has been established with support from the Pulley family to provide enhanced mental health services for people living with ALS and their loved ones in the Greater New York area. The Program will create access to specialized and essential psychotherapy inclusively across the community. Through a new full-time Licensed Clinical Social Worker, as well as grants for patients and families with specific mental health needs, this comprehensive initiative will be the first of its kind for those impacted by ALS.
Wrapped in Care: Maureen's Story
When Maureen reached out to ALS United Greater New York last spring, everyday tasks were becoming harder, and the path forward felt uncertain. Through one of our nine multidisciplinary ALS clinic partners, she connected with expert clinicians providing comprehensive, state-of-the-art ALS care, alongside local providers she knew and trusted. Being introduced to her regional Care Coordinator brought immediate relief, helping her understand that she did not have to navigate ALS alone.
$17M+
We are proud to partner with and support the following groundbreaking research organizations and initiatives in 2025:
- Milton Safenowitz Postdoctoral Fellowship Program
- The Accelerating Medicines Partnership in ALS (AMP-ALS)
- Expanded Access | Target ALS
- ALS Network Research Program | Robert Packard Center for ALS Research
- The Network for Excellence in ALS Consortium (NEALS)
Research Advancements
ALS United Greater New York has invested $17 million in ALS research to date, funding initiatives like the Milton Safenowitz Postdoctoral Fellowship Program, which nurtures the next generation of ALS scientists, with more than 75% of fellows going on to continue working in the field. This year, the organization also launched a new joint research funding partnership with the Robert Packard Center for ALS Research alongside 14 other ALS United member organizations, furthering the collective commitment to breakthrough discoveries. From national scientific forums to the International ALS/MND Alliance Meeting in Toronto, ALS United Greater New York remains actively engaged in advancing global collaboration to accelerate progress for people living with ALS.
Advocacy
At ALS United Greater New York, advocacy is a powerful driver of change, directly improving the lives of people living with ALS and their families. For more than 30 years, dedicated advocates have helped shape federal and state policies, secure critical funding, and elevate awareness, strengthening care and support across our community. In 2025, both New York and New Jersey passed landmark legislation designating ALS as a reportable disease and establishing statewide registries to improve data collection, research, and care planning. Also, both states secured funding for ALS care. These victories reflect the impact of sustained community advocacy and the efforts of legislative champions.
Walk ALS
In 2025, we held Walk ALS events from May through October in New York City, Westchester, North Jersey, the Jersey Shore, Long Island, and the Hudson Valley. With more than 4,000 walkers in attendance, $1.3 million was raised to support programs, services, and research. We are grateful to the many dedicated and visionary team captains, event participants, volunteers, sponsors, and ALS advocates who participated. Join us for one of our six walks in 2026 at alswalks.org!
Lou Gehrig Legacy Gala
The annual Lou Gehrig Legacy Gala brought together the ALS community on November 11, 2025, at Pier Sixty, raising $1 million to support free services for people living with ALS. Hosted by ESPN's Jeremy Schaap with awards presented by Bob Costas, the evening honored remarkable honorees, including Tom Pulley, Dr. Kasper Roet, New York Yankee Gerrit Cole, and MLB reporter Sarah Langs, each representing the spirit of courage, innovation, and dedication that defines the fight against ALS.
TEAM ALS
Over the course of 2025, Team ALS raised more than $475,000, thanks to the efforts of 100 athletes from around the world, and a significant representation from our local community in Greater New York. These athletes participated in the TCS New York City Marathon, United Airlines NYC Half, NYCRuns Brooklyn Experience Half Marathon, TD Five Boro Bike Tour, and individual endurance events. We are actively recruiting participants to join Team ALS for one of our 2026 endurance events. If you are interested, please contact Charlotte Seto at 212-720-3054 or cseto@als-ny.org.
Community Fundraisers
Through the creativity and commitment of our local community, independently hosted events raised awareness of ALS and generated more than $450,000 to support care services, advocacy, and research. These gatherings brought people together in meaningful ways—neighbors, friends, and families turning their passion into action. From the annual Iron Horse Party to golf outings, sports competitions, and community Walks, each event reflected the power of grassroots leadership and the difference one idea can make.
The ALS Iron Horse Golf Classic
The ALS Iron Horse Golf Classic marked its eighth successful year on Monday, August 11, 2025, at Sands Point Golf Club. More than 100 golfers came together to enjoy a beautiful day on the course and helped to raise more than $150,000 in support of our services and programs. Save the date for the ninth Annual ALS Iron Horse Golf Classic on Monday, August 10, 2026!
Awareness & Education
ALS awareness and education are vital in the fight against ALS, empowering families, guiding care, and driving progress in research and advocacy. This past year, ALS United Greater New York brought the community together to learn, connect, and support those living with ALS. Throughout the year, ALS United Greater New York hosted a range of events that brought the community together for education, awareness, and connection, from research-focused "Talk. Learn. Connect." events on Long Island and at the Yogi Berra Museum to Lou Gehrig Day at Yankee Stadium and an ALS Awareness night at Citi Field. ALS Awareness Month reached a national stage with digital ads in Times Square and a ceremonial ringing of the New York Stock Exchange opening bell, while Family Days in Long Island and Hudson Valley offered meaningful connections and resources for those living with ALS. Community generosity also shone through special experiences provided by the Team Goose Foundation and the New York Islanders, giving ALS community members memorable moments with athletes and entertainers.
Your Support
Thank you to everyone who contributed to the mission of ALS United Greater New York in 2025! Without your support, our programs and services would not otherwise be possible.