irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $48KTO HELP EDUCATE AND RAISE AWARENESS TO ALS.
- #2 $25KFINANCIAL SUPPORT FOR ALS RESEARCH GIVEN TO VARIOUS INSTITUTIONS.
named programs · 3 · from sources
What they call their work
ALS Awareness and Education Initiative
Program focused on educating the public about ALS, reducing stigma, and increasing awareness through events, media outreach, and community engagement.
ALS Research Funding Program
Provides financial support to institutions conducting ALS research, aimed at advancing scientific understanding and developing potential cures.
Wheelchair-Accessible Van Rental Assistance Program
Nationwide program providing short-term financial assistance to cover rental costs of wheelchair-accessible vans for ALS patients and their families, enabling participation in medical appointments, family events, and other essential activities.
activities · 9 groups
What they do
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Charity Event Organization 2 activities
- ALS awareness campaigns through advocacy eventsHosts annual multi-day patient advocacy events during ALS Awareness Month in May, where patients in electric wheelchairs or scooters travel a lengthy route to raise public awareness and funds; also conducted a historic 15-day wheelchair ride from Yankee Stadium to Washington in 1998 for the same purpose.
- Community engagement through benefit events and mediaHosts annual benefit events such as the Honoree Recognition Benefit and the Tony Hendra ALS Ride For Life Bike Trek, and produces video recaps, photo galleries, and virtual journals to engage the community and promote awareness.
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Public Awareness and Educational Outreach 1 activity
- ALS education and awareness outreach in schools and communitiesConducts educational outreach programs in schools and communities to raise awareness about ALS and promote compassion, volunteerism, and public understanding of the disease.
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Grief Support Groups and Counseling 1 activity
- Bereavement support groups for ALS-affected individualsOffers bereavement support groups for individuals who have lost a spouse or life partner to ALS, facilitated remotely via Zoom to enable broad participation.
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Hospice and Palliative Care Services 1 activity
- End-of-life doula support servicesProvides up to 15 end-of-life doula support sessions per grant recipient through licensed practitioners to support ALS patients and their families during palliative stages.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding ALS researchRaises and allocates funds for research to find a cure for ALS, providing financial support to various institutions conducting scientific and medical research on the disease.
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Hospital and Medical Center Support 1 activity
- Funding of the Christopher Pendergast ALS Center of ExcellenceFunds the Christopher Pendergast ALS Center of Excellence at Stony Brook, having donated over $900,000 to support patient services and operations at the center.
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Home Accessibility Modifications 1 activity
- Funds home modifications and equipment assistance for ALS-affected familiesProvides funding for home modifications and equipment assistance to support families affected by ALS, including past operation of a dedicated home modification program.
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Respite Care for Developmental Disabilities 1 activity
- Respite care and legal documentation support for ALS patientsProvides respite care, mobility assistance, and support with legal documentation for individuals living with ALS to improve quality of life and reduce caregiver burden.
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Transportation Access Support 1 activity
- Wheelchair-accessible van rental and transportation assistanceProvides short-term financial assistance for wheelchair-accessible van rentals to help ALS patients and their families access transportation, including rental support and related services.
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financials · form 990 · fy2024
revenue
Total revenue$970K
Contributions & grants$757K78%
Program service revenue$00%
Investment income$35K4%
Other revenue$178K
expenses
Total expenses$688K
Program expenses85%
Admin / overhead7%
Fundraising8%
Salaries & benefits$40K
Grants paid out$32K
Largest expense lineFacilities
balance sheet
Total assets$1.45M
Cash$901K
Investments$104K
Liabilities$7K
Net assets$1.44M
Liquid reserves17.5 mo
3 years on record · 2020–2024 · YoY revenue +37.3%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| MARILYN SLOAN | EXECUTIVE DI | 40 | $79K |
board members · 14
- CHRISTINA RAIA — SECRETARY
- CHRISTINE PENDERGAST — DIRECTOR
- COURTNEY BARRETT — DIRECTOR
- FRANK SORRENTINO — TREASURER
- JANICE ROHLF — 1ST VICE CHA
- JEREMY COHN — CHAIRMAN
- NANCY BURNER — DIRECTOR
- NICK HENDRA — DIRECTOR
- PAUL WEISMAN — DIRECTOR
- RAY MANZONI — PRESIDENT
- RICH PANICO — DIRECTOR
- RICHARD IANNUZZI — 2ND VICE CHA
- THOMAS BOERUM — DIRECTOR
- THOMAS BUONAIUTO — DIRECTOR
relationships · 41
Who they work with
- ALS Association Partner — Collaborated as a sponsor of the 28th Honoree Recognition Benefit.
- ALS Association Partner — Participated as a Team Manager in the 29th Honoree Recognition Benefit
- ALS Finding A Cure We Care Partner — Awarded a Mobility for All Grant to ALS Ride For Life in 2022.
- ALS Watchdogs Partner — Sponsored the 28th Honoree Recognition Benefit as a Centerpiece Sponsor.
- Basic Brown Nocera Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- CBAM Homes Partner — Served as Media Sponsor for the 29th Honoree Recognition Benefit
- CDC Government — Source of ALS information and frequently asked questions used on the organization's website.
- Camco Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- Christopher Pendergast Partner — Founder of ALS Ride For Life and person living with ALS (PALS) who initiated the organization.
- Cone Zone Partner — Sponsored the 29th Honoree Recognition Benefit as a Stadium Sponsor
- Frank and Valerie Sorrentino Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- Island Federal Credit Union Partner — Sponsored the 29th Honoree Recognition Benefit as a Stadium Sponsor
- Land Rover Freeport Partner — Sponsored the 28th Honoree Recognition Benefit as a Team Manager.
- Leandro P. Rizzuto Foundation Partner — Co-awarded a Mobility for All Grant to ALS Ride For Life in 2022.
- Li Realtor Partner — Sponsored the 29th Honoree Recognition Benefit as a Stadium Sponsor
- Liam Connect Partner — Sponsored the 28th Honoree Recognition Benefit as a Team Manager.
- Local 338 Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- Local 338 Charities Partner — Sponsored the 28th Honoree Recognition Benefit as a Team Manager.
- Magii, Inc. Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- Manzoni Real Estate Team Partner — Sponsored the 28th Honoree Recognition Benefit as a Team Sponsor.
- Mather Northwell Health Partner — Sponsored the 28th Honoree Recognition Benefit as a Team Manager.
- National Hockey League (NHL) Government — Provided generous funding in honor of Pat LaFontaine & Family through its community program.
- Nick Hendra Partner — Board member who led a fundraising effort with friends to support ALS Ride For Life's Patient Service Programs.
- OALI Partner — Served as Media Sponsor for the 29th Honoree Recognition Benefit
- Premier Payroll NY Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- SBM Partner — Sponsored the 29th Honoree Recognition Benefit as a Centerpiece Sponsor
- Sigma America Partner — Sponsored the 28th Honoree Recognition Benefit as a Team Manager.
- Site One Landscape Partner — Sponsored the 28th Honoree Recognition Benefit as a Centerpiece Sponsor.
- Site One Landscaping Partner — Donated centerpieces for the 29th Honoree Recognition Benefit event
- St. Joseph's University Partner — Participated as a Team Manager in the 29th Honoree Recognition Benefit
+ 11 more
strategies · 3
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.
- Comprehensive Family Support through Integrated Caremethodology: comprehensive-family-supportBy combining practical assistance with emotional connection and personalized care, the organization improves outcomes for families affected by ALS because treating them as an extension of their own fosters trust, continuity, and holistic well-being.
- Integrated Academic Medical Partnershipmethodology: academic-medical-partnershipBy locating services within a university medical facility, the organization enhances patient access to cutting-edge care and research because integration with academic health resources enables seamless referral, innovation, and multidisciplinary collaboration.
- Peer-Based Emotional Resilience Modelmethodology: peer_supportBy connecting individuals who share lived experiences of losing a partner to ALS, the organization builds emotional resilience and mutual support because shared understanding reduces isolation and strengthens coping mechanisms.