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EPILEPSY ASSOCIATION OF WESTERN NEW YORK INC

BUFFALO, NY · EIN 160845451 · Form 990 · FY2025 · Small ($100K-$1M) · epilepsywny.org
revenue
$377K
expenses
$443K
net assets
$126K
employees
6
program ratio
84%
mission · from form 990

TO ADVANCE KNOWLEDGE OF EPILEPSY AND RELATED CONDITIONS AND TO RECEIVE, ADMINISTER, AND DISBURSE MONEY OR PROPERTY FOR CHARITABLE, SCIENTIFIC, AND EDUCATIONAL PURPOSES.

profile · synthesized from sources

Nonprofit organization serving individuals and families affected by epilepsy in Western New York. Provides direct services including counseling, family support, and health and wellness programs. Offers community education on epilepsy management, first aid, and stigma reduction, with a focus on improving quality of life and promoting social inclusion.

named programs · 5 · from sources

What they call their work

Adult Epilepsy Counseling
Offers individual and group counseling, vocational guidance, and liaison services to help adults with epilepsy manage emotional, social, and practical challenges.
Epilepsy Association Scholarships
Provides scholarships to individuals with epilepsy through the Epilepsy Fund of WNY, Inc., funded by the estate of Dennis Durfee.
Epilepsy Health & Wellness Sessions
Free classes in meditation, relaxation techniques, and energy healing to reduce stress and promote well-being for people with epilepsy and their caregivers.
Family Support
Provides parent training, family counseling, and sibling support to help families adjust to a child's epilepsy diagnosis and improve family dynamics.
Outreach Education
Delivers educational presentations on epilepsy, seizure types, and first aid to schools, healthcare providers, and community organizations.
activities · 6 groups

What they do

  • Disease-Specific Clinical & Patient Education 2 activities
    • Distribution of educational materials and resources
      Provides accessible educational content through a blog, a free newsletter (The Epi-Gram), and informational resources about epilepsy diagnosis, causes, treatments, and living with epilepsy.
    • Epilepsy education and community outreach programs
      Conducts in-person and virtual educational in-services, presentations, and public awareness campaigns for schools, healthcare providers, community organizations, and the general public, covering seizure first aid, seizure types, medications, treatments, and general epilepsy information.
  • Neurological Disorder Research & Rehabilitation 1 activity
    • Advancing epilepsy knowledge through research and education
      Conducts charitable, scientific, and educational activities to advance understanding of epilepsy and related conditions.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Direct support services for individuals and families affected by epilepsy
      Provides individual, family, and group counseling; parent training; child and sibling support services; and coordination with schools, medical providers, legal services, and social service agencies to support adjustment, communication, and effective management of epilepsy.
  • Charity Event Organization 1 activity
    • Public awareness and fundraising events
      Organizes the annual Maggie Lee Memorial 5K Run/Fun Walk for Epilepsy Awareness, including post-event activities and fundraising, with proceeds supporting outreach, education, and awareness initiatives.
  • Healthcare Education Scholarships and Fellowships 1 activity
    • Scholarship program administration
      Administers a scholarship program for individuals affected by epilepsy, funded through the Epilepsy Fund of WNY, Inc.
  • Uncategorized 1 activity
    • Health and wellness programming for people with epilepsy and caregivers
      Offers free in-person health and wellness classes in Buffalo, NY, focused on stress reduction, healthy living habits, and overall well-being for individuals with epilepsy and their caregivers.
financials · form 990 · fy2025
revenue
Total revenue$377K
Contributions & grants$360K96%
Program service revenue$4440%
Investment income$4310%
Other revenue$16K
expenses
Total expenses$443K
Program expenses84%
Admin / overhead16%
Fundraising0%
Salaries & benefits$361K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$173K
Cash$145K
Investments$0
Liabilities$48K
Net assets$126K
Liquid reserves3.9 mo
6 years on record · 2020–2025 · YoY revenue -16.5%
leadership · form 990 part vii · fy2025

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
JEFFREY IRWIN EXECUTIVE DIRECTOR 35 $99K
board members · 8
  • ALEXUS P LUDWIG DO — DIRECTOR
  • CATHERINE KETTNER — DIRECTOR
  • DANIEL SUTTELL CPA — TREASURER
  • KYLE KIEFFER — DIRECTOR
  • REBECCA SMITH — VICE PRESIDENT
  • ROBERT GLOVER MD — DIRECTOR
  • SEAN RADLICH — PRESIDENT
  • THERESA DRUM — SECRETARY
relationships · 5

Who they work with

  • Epistle Fund of WNY, Inc. Partner — Partner organization through which scholarship funds are administered.
  • St George Hall Partner — Hosts the 25th Annual Maggie Lee Memorial 5K Run/Fun Walk event.
  • legal and other social service providers Partner — Refers and links families to legal and social service agencies for additional support.
  • medical community Partner — Provides liaison and referral services to connect families with medical providers.
  • public and private schools Partner — Collaborates with schools to promote understanding of epilepsy and address social challenges faced by 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.

  • Comprehensive Support Model
    methodology: comprehensive_support_model
    By integrating education, advocacy, and direct services, the organization produces holistic support for individuals and families affected by epilepsy because addressing multiple dimensions of need concurrently leads to more sustainable outcomes and greater system navigation capacity.
  • Family-Centered and Systems-Based Care
    methodology: family-centered_care
    By engaging entire families and addressing systemic dynamics, the organization strengthens support for children with epilepsy because family-wide involvement improves care continuity, social inclusion, and long-term adjustment within school and community settings.
  • Holistic Case Management
    methodology: holistic case management
    By integrating counseling with coordination across health, legal, vocational, and social systems, the organization addresses the full spectrum of client needs because epilepsy’s impact is multifaceted and effective support requires breaking down service silos.
  • Peer-Led Support for Emotional Resilience
    methodology: peer_support_groups
    By facilitating peer-led support groups, the organization improves coping and adjustment among individuals with epilepsy because shared lived experiences foster trust, reduce isolation, and enhance emotional resilience in ways that clinical interventions alone cannot.
  • Stigma Reduction Through Audience-Tailored Education
    methodology: stigma-reduction_through_education
    By delivering education that is customized to audience age and context and that reframes epilepsy with historical and medical facts, the organization reduces stigma because accurate, relatable knowledge displaces myths and builds public empathy.