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ALS UNITED GREATER NEW YORK INC
NEW YORK, NY · EIN 133616680 · Form 990 · FY2024 · Medium ($1M-$10M) · als-ny.org
revenue
$4.5M
expenses
$5.1M
net assets
$5.1M
employees
28
volunteers
150
program ratio
84%
mission · from form 990

DISCOVER TREATMENTS & A CURE FOR ALS, & SERVE, ADVOCATE FOR, & EMPOWER PEOPLE AFFECTED BY ALS.

profile · synthesized from sources

ALS United Greater New York supports individuals and families affected by ALS through free care services, advocacy, and education while funding global research initiatives. The organization operates in New York City, Long Island, the Hudson Valley, and northern and central New Jersey, offering care coordination, mental health support, and community programs. It advances research through partnerships and fellowships and advocates for policy changes at state and federal levels.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $412K
    RESEARCH: ALS UNITED GREATER NEW YORK HAS FUNDED CLOSE TO $17 MILLION IN ALS-SPECIFIC RESEARCH EFFORTS TO SUPPORT INNOVATIVE AND DIVERSE SCIENTIFIC RESEARCH STUDIES AND CLINICAL TRIALS WORLDWIDE. THE ORGANIZATION IS PARTICULARLY PROUD TO SUPPORT THE MILTON SAFENOWITZ POST-DOCTORAL FELLOWSHIP PROGRAM, WHICH ENCOURAGES AND FACILITATES PROMISING YOUNG SCIENTISTS TO FOCUS THEIR FUTURE WORK IN THE FIELD OF ALS RESEARCH.
  2. #2 $362K
    PUBLIC AWARENESS AND EDUCATION: ALS UNITED GREATER NEW YORK WORKS TO PROMOTE AWARENESS TO AFFECTED FAMILIES TO HELP THEM UNDERSTAND ALL FACETS OF THE COMPLEX AND DEVASTATING DISEASE THAT IS ALS, AS WELL AS THE WORK OF THE ORGANIZATION AMONG THE GENERAL PUBLIC, HEALTHCARE PROFESSIONALS, AND THE SCIENTIFIC COMMUNITY. THROUGH EXTERNAL RELATIONS, OUR WEBSITE AND SOCIAL MEDIA CHANNELS, THE ORGANIZATION CONTINUALLY RAISES AWARENESS ABOUT ALS AND THE SEARCH FOR A CURE. ON AVERAGE, 63,000 VIEWERS VISIT OUR WEBSITE ANNUALLY TO ACCESS THIS VITAL SOURCE OF INFORMATION FOR THOSE BATTLING THE DISEASE AND LOOKING FOR INFORMATION ABOUT SERVICES AND THE LATEST NEWS ABOUT THE DISEASE. OUR SOCIAL MEDIA PLATFORMS, INCLUDING FACEBOOK, INSTAGRAM, YOUTUBE, X AND LINKEDIN REACH 18,500 FOLLOWERS.
named programs · 5 · from sources

What they call their work

Care Services
Offers free, comprehensive support through care coordinators, multidisciplinary clinic partnerships, and emotional and practical assistance for individuals and families affected by ALS.
Education and Resource Summit
Annual virtual event providing education, resources, and connection opportunities for people living with ALS and their caregivers.
Family Connection Events
Regional gatherings in Hudson Valley and Long Island that provide support, resources, and connection for families affected by ALS.
Talk. Learn. Connect.
Series of events offering speakers and discussions on ALS-related topics to educate and connect the community.
The Tom and Jill Pulley Mental Health and Wellness Program
Provides enhanced mental health services, including specialized psychotherapy and grants, for people living with ALS and their families in the Greater New York area.
activities · 7 groups

What they do

  • Healthcare Policy Advocacy 1 activity
    • Advances policy change for the ALS community through state and federal advocacy
      Engages in bipartisan advocacy at national, state, and local levels by educating policymakers, mobilizing constituents, and conducting annual meetings with Congressional officials. Contributed to passage of the Dennis Crawley Genetic Protection Act and ALS registry legislation in New York and New Jersey in 2025, and helped secure increased federal funding for ALS research.
  • Patient and Researcher Conferences 1 activity
    • Facilitates virtual and in-person support, education, and connection programs for the ALS community
      Hosts virtual support groups led by social workers and nurses, organizes the annual Education & Resource Summit, regional Family Connection events, and Talk. Learn. Connect. program to deliver education, resources, and peer support. Also conducts monthly engagement events such as fitness activities and happy hours for young professionals.
  • Genetic and Neurological Disease Research Funding 1 activity
    • Funds ALS research initiatives and fellowships globally
      Funds ALS-specific research studies, clinical trials, and innovative research collaborations worldwide. Has committed over $15 million to ALS research, including support for the Milton Safenowitz Post-Doctoral Fellowship Program and a joint 2025 funding partnership with the Robert Packard Center and 14 other ALS United affiliates.
  • Durable Medical Equipment Loan Programs 1 activity
    • Operates an Equipment Loan Program for people with ALS
      Provides essential assistive devices and equipment to individuals living with ALS, with volunteer-supported pick-up and drop-off services to ensure accessibility.
  • Charity Event Organization 1 activity
    • Organizes fundraising events to support ALS care, research, and advocacy
      Hosts major annual fundraising events including Walk ALS (spring and fall), The Lou Gehrig Legacy Gala, the Iron Horse Golf Classic, and participation in the TCS New York City Marathon through Team ALS. Also supports personalized fundraising initiatives such as Facebook Fundraisers and tribute webpages.
  • Comprehensive Care Management Services 1 activity
    • Provides free expert care and support services to individuals and families affected by ALS
      Offers cost-free care and support programs including home visits, emotional and psychological support, and access to professional Care Service Coordinators who provide expert advice. Expanded Accessibility Services and launched the Tom and Jill Pulley Mental Health and Wellness Program in 2025, which includes a full-time Licensed Clinical Social Worker and psychotherapy grants.
  • Uncategorized 1 activity
    • Conducts public awareness and education about ALS through digital platforms
      Disseminates information and resources about ALS via its website and social media channels, reaching approximately 63,000 website visitors and 18,500 followers annually.
financials · form 990 · fy2024
revenue
Total revenue$4.47M
Contributions & grants$5.41M121%
Program service revenue$00%
Investment income$224K5%
Other revenue$-1.16M
expenses
Total expenses$5.07M
Program expenses84%
Admin / overhead7%
Fundraising9%
Salaries & benefits$2.43M
Grants paid out$260K
Largest expense lineCompensation
balance sheet
Total assets$6.64M
Cash$1.93M
Investments$2.96M
Liabilities$1.55M
Net assets$5.09M
Liquid reserves11.6 mo
5 years on record · 2020–2024 · YoY revenue -7.8%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 6
NameTitleHours/wkCompensation
KRISTEN COCOMAN PRESIDENT & CEO 40 $230K
REGINA ACKLEY VICE PRESIDENT & COO 40 $177K
JORDANA NEWLER DIR. OF FUNDRAISING 40 $137K
VIVIAN BANKS DIR. OF IND. & INST. GIVING 40 $135K
DEBRA SCHLOSSBERG CHIEF CARE SVCS OFFICER 32 $120K
MICHELLE MCKENZIE CARE SVCS COORDINATOR 40 $110K
board members · 18
  • ALAN LEVINE — DIRECTOR
  • ALICE CLAAR — DIRECTOR
  • ALLEN POPOWITZ ESQ — CHAIRMAN
  • AMANDA GLUCK — DIRECTOR
  • DAVID LUBARS — DIRECTOR
  • DORINE GORDON — DIRECTOR
  • ERIC BERNIKER — DIRECTOR
  • JOSHUA RAND — DIRECTOR
  • KEVIN GLASSMAN MD — DIRECTOR
  • LEE BRODSKY — DIRECTOR
  • LENNARD KATZ — VICE CHAIR
  • MATTHEW PERLINE — DIRECTOR
  • NANCY MIRINGOFF — SECRETARY
  • NIRALI SHAH ESQ — DIRECTOR
  • PETER ROSENBERGER — DIRECTOR
  • ROBERT TUCHMAN — DIRECTOR
  • W MARC LANE — TREASURER
  • WENDY J SCHRIBER ESQ — DIRECTOR
relationships · 21

Who they work with

  • ALS Network Research Program Partner — Supported research program focused on ALS innovation
  • ALS United Network — Became part of ALS United in September 2023, joining 15 other independent ALS organizations.
  • Charity Navigator Government — Independent charity evaluator that awarded ALS United Greater New York an eight-consecutive-year Four-Star rating.
  • Congress Government — Engages bipartisan members of Congress in advocacy efforts on behalf of people with ALS.
  • Dennis Crawley Coalition — Coalition partner in advocacy efforts for the Dennis Crawley Genetic Protection Act.
  • Facebook Partner — Platform used to enable supporters to create online fundraisers for ALS United Greater New York.
  • Milton Safenowitz Partner — Funds the Milton Safenowitz Post-Doctoral Fellowship Program to support early-career scientists in ALS research.
  • Milton Safenowitz Postdoctoral Fellowship Program Partner — Funded initiative to train early-career ALS scientists
  • New York Islanders Partner — Collaborated to provide memorable experiences for ALS community members
  • Robert Packard Center for ALS Research Partner — Joint research funding partnership launched in 2025 to advance ALS research
  • Sands Point Golf Club Partner — Host venue for the annual Iron Horse Golf Classic.
  • TCS New York City Marathon Partner — Charity partner participation enabling Team ALS runner support and volunteer engagement.
  • Target ALS Partner — Partnered on Expanded Access research initiative
  • Team Goose Foundation Partner — Provided special experiences for ALS community members through collaboration
  • The ALS Association Network — Official member of The ALS Association since 1995.
  • The Accelerating Medicines Partnership in ALS (AMP-ALS) Partner — Supported research initiative advancing drug development for ALS
  • The Network for Excellence in ALS Consortium (NEALS) Partner — Supported consortium advancing clinical research and trials in ALS
  • Yankee Stadium Partner — Collaborates on events such as Lou Gehrig Day to raise awareness and funds for ALS.
  • government entities Partner — Collaborates with government entities on research initiatives to discover a cure for ALS.
  • private industry Partner — Partners with private industry on innovative research efforts to advance ALS treatment and cure discovery.
  • scientists Partner — Collaborates with scientists on state-of-the-art research to discover a cure for ALS.
strategies · 5

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Adaptive Care Model with Integrated Clinical Network
    methodology: adaptive_care_model
    By providing comprehensive care that adapts to the evolving needs of individuals with ALS and coordinating through a network of multidisciplinary clinics and local providers, the organization ensures timely, expert, and continuous support because responsive, integrated systems improve care continuity and patient outcomes.
  • Collaborative Research Acceleration through Shared Infrastructure
    methodology: collaborative_research_acceleration
    By prioritizing cross-sector collaboration and shared research resources—such as data, protocols, and biological samples—the organization accelerates ALS research because open science practices reduce duplication and increase discovery speed.
  • Equipment Access Bypass for Timely Care
    methodology: equipment-access-bypass
    By providing assistive devices through an Equipment Loan Program independent of insurance timelines, the organization ensures uninterrupted care because eliminating systemic delays preserves function and dignity during critical transitions.
  • Peer-Led Support with Professional Facilitation
    methodology: peer_support_with_professional_facilitation
    By combining lived experience with professional guidance in support groups, the organization builds resilient community networks because peer engagement increases emotional sustainability and information sharing more effectively than clinical-only models.
  • Research Capacity Building via Fellowship Programs
    methodology: research_capacity_building
    By investing in early-career scientists through structured fellowships, the organization builds long-term research capacity because sustained human capital development leads to durable scientific progress in ALS.