named programs · 5 · from sources
What they call their work
Community Training
Offers in-person and virtual Spina Bifida trainings tailored to schools, clinicians, disability service providers, and systems specialists across New York State.
E-News
Monthly email newsletter providing resources on advocacy, health, research, Social Security, and disability-related programs for individuals and families affected by Spina Bifida.
Quarterly Newsletter
Distributes a printed and digital newsletter with organizational updates, program invitations, and educational resources to stakeholders statewide.
School-Based Resources
Provides the Toolkit for Educators and Parent Supplement to support teachers and parents in enhancing the educational experience of students with Spina Bifida.
Support Services
Offers individual, peer, and group support; information and referral; and systems navigation assistance for insurance, transportation, employment, special education, housing, and benefits.
activities · 3 groups
What they do
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Neurological Disability Support & Advocacy 6 activities
- Advocate through community engagement and policy collaborationParticipates in community trainings, tabling events, media engagement, and collaboration with New York State representatives to educate about life with Spina Bifida and strengthen outreach and partnerships with hospitals and providers across New York State.
- Conduct data collection and assessment for program improvementConducts data collection and assessment to inform programs and advance the mission for individuals impacted by Spina Bifida.
- Offer educational resources and trainingsOffers in-person and virtual Spina Bifida trainings tailored to specific audiences across New York State, along with school-based resources such as the Toolkit for Educators and the Parent Supplement to support educators and parents of students with Spina Bifida.
- Provide curated resources for families and caregiversProvides curated resources for expectant parents of children with Spina Bifida, makes clinical care guidelines available to families and caregivers, and connects individuals to the National Spina Bifida Association for questions and referrals.
- Provide no-cost support, education, and advocacy servicesProvides no-cost support, education, and advocacy services to individuals with Spina Bifida across all life stages, including individual and group support, referrals, and assistance navigating systems such as insurance, transportation, employment, special education, housing, benefits, and disability services.
- Serve on advisory boards to inform clinical care and community leadershipServes on the Parent Advisory Board for the Spina Bifida Clinic at The Children’s Hospital of Philadelphia, contributing peer advocacy, training, community leadership, and financial management expertise.
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Organizational Newsletter Production and Distribution 1 activity
- Distribute informational and educational materialsDistributes information about Spina Bifida through social media, email news, monthly email updates, and a quarterly newsletter containing resources on advocacy, health, research, social security, and disability-related programs, as well as organizational updates, program invitations, and educational content.
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Nonprofit Internship Programs 1 activity
- Offer internship opportunities for student capacity buildingOffers school-based internship positions for students in social work, nonprofit management, business, and marketing to build professional capacity and support workforce development.
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financials · form 990 · fy2024
revenue
Total revenue$357K
Contributions & grants$190K53%
Program service revenue$00%
Investment income$17K5%
Other revenue$149K
expenses
Total expenses$261K
Program expenses88%
Admin / overhead10%
Fundraising3%
Salaries & benefits$154K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$363K
Cash$31K
Investments$279K
Liabilities$4K
Net assets$358K
Liquid reserves14.2 mo
4 years on record · 2020–2024 · YoY revenue +72.1%
leadership · form 990 part vii · fy2024
Who runs it
board members · 12
- ABBY MUNDELL — Chair Elect
- ANDREW WHITE — Director
- CHRIS DARBY-KING — Director
- DAVE WENTWORTH — Director
- DIANE SKIBINSKI — Secretary
- JAMES DUNHAM — Imm. Past Chair
- JESSICA HIPP — Treasurer
- JOE SLANINKA — Chair
- KEVIN CHAMBERLAIN — Director
- KIRSTYN CERONE — Secretary
- MICHELLE MILLER — Chair Elect
- PAUL LUKASIEWICZ III — DIRECTOR
relationships · 7
Who they work with
- Child Neurology Foundation Partner — Provides certification for peer advocacy and training, supporting organizational capacity in family support services.
- Henry Viscardi School Partner — Board member employed as Wheelchair Basketball Coach and Assistant Teacher, indicating professional and programmatic connection.
- National Spina Bifida Association Partner — Collaborates with the National Spina Bifida Association to provide resources, referrals, and support to expectant and new parents.
- New York State Government — Seeks funding and policy support from the New York State government for programs serving individuals with Spina Bifida.
- New York State representatives Government — Collaborates with New York State representatives to provide education on life with Spina Bifida.
- The Children's Hospital of Philadelphia Partner — Collaborates through shared membership on the Parent Advisory Board for the Spina Bifida Clinic.
- local universities Partner — Collaborates with local universities to offer school-based internship positions for students.
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.
- Data-Driven Program Improvementmethodology: data-driven programmingBy using data collection and assessment to guide programming, the organization enhances mission impact and service quality because iterative learning allows for evidence-based refinement of interventions and resource allocation.
- Holistic Support Frameworkmethodology: holistic_support_frameworkBy integrating support, education, and advocacy into a unified framework, the organization addresses the full spectrum of needs associated with Spina Bifida, improving long-term outcomes because comprehensive models prevent service fragmentation and increase engagement across life domains.
- Individualized Care Planningmethodology: individualized_careBy tailoring treatment and support plans to the specific type and severity of Spina Bifida, the organization improves health and quality-of-life outcomes because personalized approaches better match medical and functional needs across a highly variable condition.
- Lived Experience Leadershipmethodology: lived-experience leadershipBy centering leadership and organizational direction on adults living with Spina Bifida, the organization ensures advocacy and services are authentically informed by those most impacted, increasing relevance, trust, and effectiveness because lived experience produces deeper insight into real-world needs and systemic barriers.
- Systems Navigation Supportmethodology: systems_navigationBy helping individuals navigate complex systems such as healthcare, insurance, education, and social services, the organization improves access to critical resources and reduces systemic barriers because expert guidance increases persistence and success in securing needed services.