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Spina Bifida of Western New York Inc
Middleport, NY · EIN 222417590 · Form 990 · FY2024 · Small ($100K-$1M) · sbwny.org
revenue
$105K
expenses
$18K
net assets
$507K
employees
0
volunteers
30
program ratio
28%
mission · from form 990

To enhance the lives of those affected by Spina Bifida in western New York

profile · synthesized from sources

Spina Bifida of Western New York Inc supports individuals with Spina Bifida and their families across eight counties in Western New York. Founded in 1973, the organization provides financial assistance, educational resources, and community engagement opportunities. It offers reimbursement programs for medical equipment, fitness, enrichment, respite care, and hospital stays, while promoting advocacy and inclusion for people affected by Spina Bifida.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $97
    Family Reimbursement Programs - 1 reimbursement was distributed for medical expenses specifically related to Spina Bifida and not covered by other funding sources.
named programs · 6 · from sources

What they call their work

Brace & Equipment Fund
Provides up to $500 per year for orthopedic equipment, incontinence supplies, adaptive equipment, assistive technology, and eyeglasses
Enrichment Activities Fund
Supports music lessons, camp fees, educational classes, tutoring, and other enrichment programs with up to $500 per year
Hospitality Fund
Reimburses up to $500 per year for parking, meals, phone charges, and TV rental during hospital stays with a 24-hour minimum
Physical Fitness Fund
Offers up to $500 per year for gym memberships, fitness classes, adapted sports programs, therapeutic horseback riding, and weight-loss programs
Respite Reimbursement Fund
Provides up to $500 per year for respite care services for caregivers of individuals over 13 years old
Scholarship Fund
Offers financial support for post-high school education including college tuition, vocational training, and para-professional training
activities · 4 groups

What they do

  • Neurological Disability Support & Advocacy 2 activities
    • Operation of educational and support programming for affected individuals and families
      Offers educational workshops, support groups, and family-friendly events for individuals and families affected by Spina Bifida. Provides information about the types and impacts of Spina Bifida to promote awareness and informed care.
    • Provision of support, resources, and advocacy for individuals with Spina Bifida and their families
      Provides assistance, support, networking, advocacy, and education to individuals and families affected by Spina Bifida across eight counties in Western New York: Erie, Niagara, Allegany, Cattaraugus, Chautauqua, Orleans, Wyoming, and Genesee. Facilitates access to peer and professional support networks and delivers educational resources on Spina Bifida and associated health conditions.
  • Residential Support for Developmental Disabilities 1 activity
    • Administration of financial reimbursement programs for medical and living expenses
      Provides financial assistance through multiple reimbursement funds, including up to $500 annually for orthopedic and adaptive equipment, incontinence supplies, and eyeglasses; hospital-related costs; respite care; physical fitness activities; and enrichment activities such as camp and tutoring. Reimbursements are issued within 30 days of approval and are targeted at expenses not covered by other funding sources.
  • Adaptive Sports Programs 1 activity
    • Operation of inclusive sports and recreational programs
      Runs a competitive sled hockey program for youth and adults with physical disabilities, including intermediate and senior teams competing in the OSHA league and international matches. Offers a special hockey program for individuals with developmental disabilities, featuring an annual tournament and mentorship from local high school athletes. Provides inclusive horseback riding experiences, seasonal clinics, equestrian camps, and referrals to therapeutic riding programs such as Centaur Stride and Lothlorien, in partnership with BOCES and with scholarship support available.
  • Financial Aid and Scholarship Access Programs 1 activity
    • Provision of scholarships for post-secondary education and training
      Offers variable-amount financial support through the Scholarship Fund for college, vocational training, and other post-high school education programs for individuals affected by Spina Bifida and related conditions.
financials · form 990 · fy2024
revenue
Total revenue$105K
Contributions & grants$25K24%
Program service revenue$5K5%
Investment income$75K71%
Other revenue$0
expenses
Total expenses$18K
Program expenses28%
Admin / overhead13%
Fundraising59%
Salaries & benefits$0
Grants paid out$0
Largest expense lineOther
balance sheet
Total assets$507K
Cash$53K
Investments$455K
Liabilities$0
Net assets$507K
Liquid reserves329.1 mo
4 years on record · 2020–2024 · YoY revenue -4.6%
relationships · 8

Who they work with

  • ASHA Network — Special hockey program is affiliated with the American Special Hockey Association (ASHA).
  • BOCES Partner — Partners with BOCES to support inclusive horseback riding programs.
  • Centaur Stride Partner — Refers participants to Centaur Stride for therapeutic riding programs.
  • Lothlorien Partner — Refers participants to Lothlorien for therapeutic riding programs.
  • USA Hockey Network — Special hockey program is affiliated with USA Hockey.
  • Western New York Network — Provides services across the 8 counties of Western New York, indicating regional network integration.
  • Western New York Network — Provides services and support to individuals and families across the Western New York region.
  • community partners Partner — Collaborates with community partners to build relationships and connect members with resources.
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.

  • Financial Barrier Reduction via Direct Reimbursement
    methodology: financial_reimbursement_model
    By providing direct financial reimbursements for uncovered medical costs, we improve access to essential care, because removing out-of-pocket burdens enables consistent treatment and reduces stress on families.
  • Individualized Support Through Clinical Understanding
    methodology: individualized_support
    By tailoring support based on the anatomical and clinical variation of Spina Bifida, we produce more effective outcomes, because personalized approaches address the highly variable needs of individuals and reduce one-size-fits-all service limitations.
  • Peer-Led Empowerment Model
    methodology: peer_led_support
    By centering leadership and program delivery on individuals directly affected by Spina Bifida and parent volunteers, we produce stronger engagement and self-advocacy, because lived experience fosters trust, relatability, and authentic representation in support services.