Spina Bifida Association of New York State

What Spina Bifida Association of New York State does

The Spina Bifida Association of New York State (SBANYS), founded in 1993 and headquartered in Scotia, NY, is a BBB-accredited 501(c)(3) nonprofit delivering statewide support, education, and advocacy services for the approximately 4,000+ New Yorkers living with Spina Bifida. Its service portfolio is organized around three pillars — Support (case management, peer support network, virtual adult groups, systems navigation for insurance, transportation, employment, housing, and benefits), Education (community trainings, school-based toolkits, monthly e-news, quarterly newsletters, expectant/new parent guidelines), and Advocacy (state and federal legislative engagement, including budget appropriation requests). A searchable Doctor Database of 200+ NYS providers and clinical integration with the Albany Med Health System Spina Bifida Clinic anchor its distribution; flagship events include the annual Conference Weekend, Walk-N-Roll fundraisers, the Dare to Dream Gala, a Yankees Game outing, and the newly launched Young Family Retreat.

Product surface is service-based rather than technology-based: there is no proprietary software platform. Operational technology consists of a WordPress website (sbanys.org), standard social channels (Facebook, Instagram, YouTube), and donation rails (PayPal, credit/debit, Venmo, recurring giving, Facebook fundraisers), plus corporate partnership flows (Billy Footwear 15% referral, Hannaford/CLYNK recycling program). The Doctor Database is the closest artifact to a 'product,' functioning as a curated resource tool rather than licensed technology. The organization's app footprint is nil — no iOS or Android app is disclosed.

Revenue is mix-driven and characteristic of a small-chapter nonprofit. Streams include individual donations and monthly recurring gifts, event-based revenue (ticket sales to the Gala, Yankees Game, and Conference), corporate sponsorships (Byram Healthcare as presenting Walk-N-Roll sponsor; Fenton Mobility matching donor; Billy Footwear; Hannaford/CLYNK), and pending/active government grants — most notably a $250,000 request in the 2026-27 NYS Budget to fund regional staff hires. All core beneficiary services are provided free of charge statewide. Operationally, SBANYS runs on a 1–10 employee team led by Executive Director Julia Duff, with governance via a board of directors and reach delivered through volunteer networks, healthcare-system partnerships, and event-driven engagement.

Name

Spina Bifida Association of New York State

Legal name

Spina Bifida Association of New York State

Website

https://sbanys.org

Company type

Private

Founded year

1993

Operating status

Operating

Headcount range

1–10 employees

Short description

Spina Bifida Association of New York State (SBANYS) is a Schenectady-area 501(c)(3) nonprofit delivering statewide support, education, and advocacy services free of charge to 4,000+ New Yorkers impacted by Spina Bifida, via clinical partnerships, a 200+ provider Doctor Database, and recurring community events.

Ownership category

akta.pro rank

Headquarters

HQ city

Scotia

HQ country

United States

HQ region

North America

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Infrastructure

Revenue model

1. Donations and Fundraising: Primary revenue source including online donations via PayPal, credit/debit, Venmo, monthly recurring donors, Facebook fundraisers, and mailed contributions. The organization also accepts recycled cans/bottles through Hannaford's CLYNK program and sells Billy Footwear merchandise with 15% donation back to SBANYS.
2. Event Revenue: Revenue generated from ticket sales to fundraising events including the Dare to Dream Gala (silent/live auction, three-course meal), Yankees Game ($85/ticket with $25 food voucher), and sponsorship opportunities. Sponsorship guide available for corporate sponsors.
3. Government Grants and Advocacy: The organization requests $250,000 in the 2026-27 New York State Budget to support hiring regional staff statewide and expanding education, outreach, and partnerships with hospitals and providers. Also participates in advocacy for federal CDC program funding.
4. Corporate Partnerships: Strategic corporate partnerships including Fenton Mobility (matching donations for Young Family Retreat), Byram Healthcare (presenting sponsor for Syracuse Walk-N-Roll), and Billy Footwear (15% of purchases donated back to SBANYS).

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels10 records

Core offering

SBANYS is a nonprofit organization that delivers free statewide support, education, and advocacy services to individuals and families impacted by Spina Bifida across the lifespan. Core offerings include case management, peer support networks, systems navigation, a 200+ provider Doctor Database, community trainings, school-based educational toolkits, expectant/new parent guidelines, and state and federal legislative advocacy. Funding comes from donations, event revenue, corporate sponsorships, and state/federal grants.

Product overview

The Spina Bifida Association of New York State (SBANYS) is a not-for-profit organization offering a comprehensive suite of services for individuals impacted by Spina Bifida across the lifespan. The organization operates through three main service pillars: Support and Programs (including case management, peer support network, virtual adult groups, and a Doctor Database), Education Services (community training, newsletters, school resources, and expectant/new parent guidelines), and Advocacy Programs (state and federal legislative advocacy). Additional offerings include annual events such as the Conference Weekend, Disability Festival, Dare to Dream Gala, and Walk-N-Roll fundraisers, as well as financial scholarships and a Young Family Retreat program. All core services are provided statewide at no cost.

Differentiator

Problem solved

Functional benefit

Products and services

• Support and Programs Core support service pillar providing case management, peer support network, virtual adult groups, and systems navigation assistance with referrals for insurance, transportation, employment, housing, and disability services to individuals with Spina Bifida and their families statewide at no cost.
• Education Services Core education service pillar offering community training sessions, monthly e-news updates, quarterly newsletters, school-based resources including the Toolkit for Educators and Parent Supplement, and distribution of information via social media to individuals, families, schools, and clinicians statewide at no cost.
• Advocacy Programs State and federal advocacy initiatives including meetings with state legislators, budget funding requests ($250,000 for 2026-27 NY State Budget), disability rights advocacy, and participation in Teal on the Hill events, supported by an Advocacy Toolkit for community engagement.
• Doctor Database Searchable online database of more than 200 New York State-based healthcare providers with experience treating individuals with Spina Bifida across various specialties, enabling individuals to find knowledgeable doctors, specialists, and clinics.
• Financial Scholarships Financial assistance program for higher education, training, or conference attendance available through the Frank Bucino Jr. Memorial Scholarship and Helen R. Mertens Scholarship for individuals impacted by Spina Bifida.
• Annual Conference Third annual SBANYS Conference titled 'Empowering Minds and Enriching Futures: Innovations in Care, Technology, and Daily Living' featuring workshops, speakers, and networking opportunities for individuals, families, and professionals; $15 per person registration (children 12 and under free; fee waiverable).
• Disability Festival ADA anniversary celebration event featuring vendor resources, community engagement, and accessible recreational activities along the Erie Canalway, presented in partnership with CNY Adaptive and Upstate Medical University Hospital.
• School-Based Resources Toolkit for Educators and Parent Supplement providing structured guidance for schools, teachers, and families supporting students with Spina Bifida in K-12 educational settings.
• Expectant and New Parents Program Resources and guidelines program for parents receiving a prenatal or newborn Spina Bifida diagnosis, including expectant parent guides, newborn support materials, provider referrals, clinic listings, National Spina Bifida Association resources, and CDC information.
• Young Family Retreat Annual recreational retreat bringing together families impacted by Spina Bifida — including parents, caregivers, and siblings — for activities such as ziplining, fishing, karaoke, crafts, and campfires.
• Dare to Dream Gala Annual fundraising gala featuring silent and live auctions, musical entertainment, three-course meal, and recognition ceremonies supporting SBANYS programs.
• Walk-N-Roll Events Family-friendly one-mile walk fundraising and awareness events including Syracuse Walk-N-Roll and Mid-Hudson Walk-N-Roll, raising funds to support SBANYS programs serving 4,000+ New Yorkers with Spina Bifida.
• Yankees Game Event Community outing at Yankee Stadium offering 40 ADA accessible seats plus 60 standard stadium seats for individuals and families impacted by Spina Bifida, at $85 per ticket including a $25 food and drink voucher.

Quantifiable outcome

• 4,000+ New Yorkers with Spina Bifida reached through events and programs
• +4 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core, minor and major.

• CNY AdaptivecoreStrategic or Co-development Partner · 26 July 2026CNY Adaptive is partnering with SBANYS to present the Disability Festival on July 26, 2026 at Cedar Bay Park, Fayetteville, NY — celebrating the ADA's 36th Anniversary with accessible activities, vendor resources, and Erie Canalway recreation.
• Upstate Medical University HospitalcoreStrategic or Co-development Partner · 26 July 2026Upstate Medical University Hospital co-presents the Disability Festival with SBANYS and CNY Adaptive on July 26, 2026, bringing together healthcare professionals, advocates, and community organizations from across New York State.
• Apex Entertainment (Destiny USA Mall)minorGTM or Marketing Partner · 24 July 2026Apex Entertainment at Destiny USA Mall in Syracuse hosts the Friday evening (6-8pm) kickoff event for SBANYS Conference Weekend 2026, featuring arcade games, bowling, axe throwing, and networking opportunities for families.
• Byram HealthcaremajorGTM or Marketing Partner · 1 January 2026Byram Healthcare serves as the Presenting Sponsor for the Syracuse Walk-N-Roll for Spina Bifida, a major annual fundraising and awareness event serving 4,000+ New Yorkers with Spina Bifida.
• Fenton MobilitymajorGTM or Marketing Partner · 1 January 2026Fenton Mobility provided matching donations for SBANYS' Summer Appeal, matching the first $2,500 to support the 2027 Spina Bifida Young Family Retreat (9 families attended inaugural retreat in 2026).
• Albany Med Health System Spina Bifida CliniccoreStrategic or Co-development PartnerSBANYS is part of the team of providers who meet with patients at the Albany Med Health System Spina Bifida Clinic, supporting clinical care coordination for individuals with Spina Bifida in the region.
• Billy FootwearminorGTM or Marketing PartnerBilly Footwear partnership where 15% of customer purchases are donated back to SBANYS, providing ongoing revenue stream while offering adaptive footwear options to the Spina Bifida community.
• Hannaford/ClynkminorGTM or Marketing PartnerSBANYS benefits from Hannaford's recycled cans and bottles program through Clynk, allowing supporters to raise money by donating recyclables to support the organization.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• March of Dimes: Large national nonprofit focused on maternal and infant health, including birth defects prevention — overlapping mission in supporting families impacted by congenital conditions like Spina Bifida.
• American Association of People with Disabilities: National disability rights and advocacy organization — comparable advocacy posture and statewide-to-federal policy engagement model.
• National Organization for Rare Disorders (NORD): Umbrella advocacy and patient-support organization for rare diseases including Spina Bifida — comparable advocacy, education, and patient navigation infrastructure across the same population.
• Easterseals: National disability services network offering support, advocacy, and community programs for individuals with disabilities and their families — overlapping service pillars with SBANYS at greater scale.

Direct peers

• Spina Bifida Association (National): The national umbrella organization for Spina Bifida that SBANYS explicitly directs beneficiaries to; serves the same condition population nationally with overlapping support, education, and advocacy programs.
• United Cerebral Palsy (now Cerebral Palsy Associations of NYS): Disability advocacy and service organization serving individuals with cerebral palsy and similar conditions in New York; directly comparable mission, statewide service delivery model, and advocacy posture.
• Spina Bifida Coalition of Cincinnati: Regional Spina Bifida chapter providing similar support, education, and advocacy for affected families — directly comparable structure as a state/local chapter within the broader SBA ecosystem.
• Muscular Dystrophy Association: National nonprofit providing support, research funding, and advocacy for individuals with neuromuscular disabilities — comparable mission scope, donor-driven revenue model, and clinical resource navigation.

Regional players

• Special Olympics New York: New York state affiliate of Special Olympics delivering programs, advocacy, and events for individuals with intellectual disabilities — analogous statewide chapter structure and community-led GTM.

Others

• New York State Office for People With Developmental Disabilities (OPWDD): New York State agency administering services for individuals with developmental disabilities including Spina Bifida — adjacent ecosystem player that SBANYS navigates beneficiaries through and partners with via advocacy.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@spinabifidaofnewyorkstate6172
• Facebookfacebook.com/SBANYS1
• Instagraminstagram.com/spinabifidanys
• LinkedInlinkedin.com/company/sbaneny

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Spina Bifida Association of New York State