Fall 2025 Newsletter
As we reflect on the past few months at ALS United Greater New York, one word stands out: family. From acknowledging the tremendous care family caregivers give to their loved ones during November’s National Family Caregivers Month to launching innovative programs, our community has come together to ensure that no one faces ALS alone.
We’re especially proud to announce the launch of the Tom and Jill Pulley Mental Health and Wellness Program, a first-of-its-kind initiative providing specialized mental health services for people living with ALS and their loved ones. Through therapy and grants, this program strengthens the support network that is at the heart of everything we do.
Across research, advocacy, and our care services, from statewide ALS registry legislation to partnerships with leading research centers, our mission remains the same: to provide compassionate care, advance treatments, and build a united ALS community.
As the holiday season approaches, consider joining us in bringing comfort, dignity, and hope to people living with ALS. Your support, through a year-end gift, volunteering, or taking action on key ALS advocacy issues, ensures families know they are not alone and helps us continue delivering critical programs. Together, we can make this season brighter for those who need it the most.
Warmly,
Your ALS United Greater New York Family
Care Services
ALS United Greater New York is proud to announce the launch of the Tom and Jill Pulley Mental Health and Wellness Program, an innovative initiative established with support from the Pulley Family to provide enhanced mental health services for people living with ALS and their loved ones in Greater New York. The program expands access to specialized psychotherapy through a full-time Licensed Clinical Social Worker and offers grants for patients and caregivers with specific mental health needs — the first program of its kind for the ALS community.
Learn more about the program here
National Family Caregivers Month - This November, as we recognize National Family Caregivers Month, we honor the incredible love, strength, and dedication of those who care for someone living with ALS. We’re grateful to the caregivers who opened up and shared their experiences supporting a loved one with ALS. From learning when to ask for help, to finding comfort in community, to discovering that caregiving itself is an act of love, these stories remind us that caregivers need care, too, and that no one should face ALS alone. At ALS United Greater New York, we’re here to be your family of support.
Read their stories at News & publications here
ALS United Greater New York’s NEW Community Advisory Board - ALS United Greater New York is excited to announce the formation of our new Community Advisory Board, made up of people living with ALS and family caregivers. By incorporating the experiences of individuals living with ALS directly into our decision-making, the advisory board empowers them and strengthens the support we provide. This united effort helps us stay informed, responsive, and deeply connected to the needs of those we serve. With input from the Community Advisory Board, our team is working together to deliver the best care possible and ensure that no one walks this journey alone.
Read more about the members here.
ALS United Greater New York Hosts Insightful Talk at Yogi Berra Museum - ALS United Greater New York recently held a special installment of its Talk. Learn. Connect. series at the Yogi Berra Museum & Learning Center. The session featured Dr. Jonathon Tiu, who shared the latest updates in ALS research, and Charles Poeppelman, Market Development, Synchron, who presented exciting advancements in brain-computer interface (BCI) technology. The Talk. Learn. Connect. series provides ongoing opportunities for the community to learn from experts, explore emerging ideas, and stay informed about the latest developments in the fight against ALS.
For more information about upcoming sessions and resources, click here.
Research
Packard Center - ALS United is proud to announce a collective investment by our member organizations in a new partnership with the Robert Packard Center for ALS Research at Johns Hopkins, one of the world’s leading programs dedicated to understanding and treating ALS. This collaboration reflects our shared commitment to accelerating progress through innovation and cooperation. Over the years, ALS United Greater New York, a member of ALS United, has invested more than $17 million in ALS research, supporting groundbreaking studies and uniting some of the brightest scientific minds in the field. By joining forces with the Packard Center, we’re ensuring that every research dollar goes further, fueling discovery, driving new therapies, and bringing us closer to a world without ALS.
NEALS Conference - In mid-October, ALS United members, including ALS United Greater New York, attended the NEALS Annual Meeting in Clearwater, Florida, where researchers, clinicians, industry leaders, and people living with ALS come together to discuss the latest advancements in research and treatment. ALS United was invited to participate in a panel discussion on collaboration, representing the voices and experiences of our members from across the country. The panel highlighted how partnerships across nonprofits, academia, government, and industry are accelerating clinical trials and improving care for people living with ALS. Together, we're building a stronger, more united ALS community. One that moves faster toward effective treatments and a cure. Together, We End ALS.
Advocacy
Advocating for Home Care Support in Washington, DC -Staff from ALS United Greater New York, the ALS Network, and ALS United Mid-Atlantic, representing all 15 ALS United member organizations, joined partners in Washington, DC, in September to advocate for stronger home care support for people living with ALS, veterans, and their families. For those with ALS, home care isn’t a convenience; it’s a lifeline. Expanding Medicaid, TRICARE, and VA benefits helps ensure that people with ALS can stay safe at home, access essential care, and receive the support their caregivers need. Together, we’re working to advance policies that improve care today and bring hope for tomorrow.
Join our advocacy team and learn about our advocacy efforts here.
ALS/MND State Registry Legislation - The ALS community has reached a major milestone: New York State has passed and signed into law its first statewide ALS registry. Championed by Assemblyman Steve Stern, Senator Jessica Scarcella-Spanton, and supported by ALS United Greater New York advocates, this newly signed legislation will move the state beyond voluntary reporting and toward accurate, comprehensive data that strengthens research, care, and the search for treatments and a cure.
Across the river, New Jersey is close behind with registry legislation advancing through the Assembly and key Senate committees and now awaiting a full Senate vote and Governor Murphy’s signature.
Read more here
Events
Lou Gehrig Legacy Gala - On November 11, ALS United Greater New York hosted its annual Lou Gehrig Legacy Gala at Pier Sixty, raising $1 million to support care services for people living with ALS and their families. The inspiring evening, hosted by ESPN’s Jeremy Schaap with awards presented by Bob Costas, honored Tom Pulley, Kasper Roet, PhD, Gerrit Cole, and Sarah Langs—individuals who embody Lou Gehrig’s enduring legacy through their leadership, compassion, and advocacy. A highlight of the night was the announcement of the new Tom and Jill Pulley Mental Health and Wellness Program, expanding access to vital mental health resources across Greater New York.
Read more here
Walk ALS 2025 - This year’s Walk season was an outstanding success with more than 6,500 walkers participating in six Walk events from May through October and collectively raising more than $1.3 million to support individuals and families affected by ALS. This achievement reflects the dedication and generosity of our team captains, event participants, volunteers, sponsors, and ALS advocates. Your commitment and fundraising efforts are essential to ensuring that the ALS community continues to receive the highest quality care and support. Thank you for standing with us in the fight against ALS!
Learn more about our six regional WALKS here - 2026 Dates Coming Soon!
TCS NYC Marathon 2025 - On Sunday, November 2, seventy runners proudly represented our mission and ran the 2025 TCS New York City Marathon with Team ALS. This year’s team brought together passionate fundraisers from across the country, including California, Illinois, Florida, Tennessee, Minnesota, and a strong contingent from our local New York Community, and collectively the team raised more than $400,000.
Our runners are more than athletes; they are doctors, educators, artists, and veterans, united by a shared commitment to advancing research and finding a cure for ALS. Together, Team ALS has grown into a remarkable community dedicated to making a difference. We are deeply grateful for this exceptional group of individuals standing with us in the fight against ALS.
Interested in joining Team ALS for the 2026 season? We are currently accepting applications to participate in the NYC Half Marathon in March, NYCRuns Brooklyn Experience Half Marathon in April, and the TD Five Boro Bike Tour in May. For more information, email Charlotte Seto at cseto@als-ny.org.
Thank you - Through your generous support, you are helping ALS United Greater New York provide much-needed services to people living with ALS. There are many ways to continue your support in the fight against ALS, such as gifts of stock, bequests, a company match, or through a donor-advised fund. All gifts directly support services, research, and advocacy programs - and any gift can be made in memory or in honor of a loved one.
For more information on how you can expand your mission-based giving, please contact Vivian Banks, Director of Individual & Institutional Giving at 212.720.3051 or Vbanks@als-ny.org.
