Epilepsy Foundation New England

What Epilepsy Foundation New England does

Epilepsy Foundation New England (EFNE) is a 501(c)(3) nonprofit organization founded in 1983, headquartered at 175 Cabot St, Suite 301, Lowell, Massachusetts, and operating as an independent affiliate of the Epilepsy Foundation of America. EFNE serves approximately 110,000-111,000 individuals and families affected by epilepsy across five New England states — Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont (Vermont was added to the service territory in January 2022). The organization's mission is operationalized around a "Help for Today, Hope for Tomorrow" framework that pairs immediate support services with research, scholarship, and advocacy investments.

EFNE delivers a broad program portfolio across service categories including: hospital-embedded Resource Rooms at nine major academic medical centers (Beth Israel Lahey, Boston Children's, Boston Medical Center, Dartmouth Hitchcock, Mass General Brigham, Massachusetts General Hospital, Tufts Medical Center, and UMASS Memorial) plus a virtual option; a Public Health AmeriCorps workforce of up to 56 epilepsy resource coordinators across six states (including Connecticut via a 2023 partnership with Epilepsy Foundation Connecticut); peer-led SHARE support groups, Young Leaders Network, Kids Connect, and Purple Camp programs; the EQOL five-year CDC-funded care-management program; the annual Blue Skies Challenge research grant competition awarding $75,000 grants; multiple scholarship programs (Joseph's Hope $4,000, Matthew Siravo, CURE up to $5,000, UCB Family Epilepsy up to $5,000-$10,000); emergency financial aid; active state-level advocacy including Maine Seizure Safe Schools legislation and a Massachusetts SUDEP bill; and signature fundraising events (walks, galas, golf tournaments, the New England Epilepsy Convention). Underlying technology is limited to the corporate website, online donation platform, newsletter infrastructure, and a Printify merchandise store; there is no proprietary software, no mobile app, and no disclosed data platform.

Revenue is generated through a multi-channel nonprofit mix: individual donations, corporate sponsorships (UCB Pharma, Lundbeck, Frank & Vicky Salituro/Almost the Cure, Creative Wealth), federal and state grants (CDC cooperative agreements, Public Health AmeriCorps), fundraising events, planned giving and stock/IRA donations, and an in-kind clothing/household goods donation program whose items are resold to generate unrestricted revenue. Leadership: John Hedstrom was appointed President & CEO effective January 6, 2026, succeeding interim CEO Kimberlee Schumacher (who took the role in May 2025); Jeff Ganz serves as Chief Operating Officer; Dr. Andrew Cole of Massachusetts General Hospital has chaired the Board of Directors since July 2020.

Name

Epilepsy Foundation New England

Legal name

Epilepsy Foundation New England

Website

https://epilepsynewengland.org

Company type

Private

Founded year

1983

Operating status

Operating

Headcount range

11–50 employees

Short description

Epilepsy Foundation New England is a 501(c)(3) nonprofit serving approximately 111,000 individuals and families affected by epilepsy across five New England states. Programs include hospital Resource Rooms, AmeriCorps coordinators, peer support groups, scholarships, research grants, and advocacy.

Ownership category

akta.pro rank

Product category

Epilepsy Community Support and Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Child and Youth Services (62411)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Epilepsy & Seizure Disorders (HLAKAIAB)

akta.pro secondary industries

Disability Services & Independent Living Support (BPAGACAG), Mental Health & Crisis Support Services (BPAGAEAH), Disability Services & Independent Living Support (BPAGAEAG)

Keywords

• Epilepsy support services
• Patient advocacy nonprofit
• Community health programs
• Medical social work
• Health education resources

Headquarters

HQ city

Lowell

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Individual Donations: Cash donations from individuals supporting the epilepsy cause, processed through the website.
2. Corporate Sponsorships: Corporate sponsorship of events including walks, galas, conferences and youth programming.
3. Government Grants: Federal grants including Public Health AmeriCorps grant ($1.38M+ in 2023) and CDC cooperative agreements ($1.5M in 2021) for improving epilepsy care and health equity.
4. Clothing and Household Donations: Curbside pickup service for clothing, dishes, household items, toys, and apparel donations that are sold to generate revenue.
5. Fundraising Events: Revenue from signature events including walks, galas, golf tournaments, and peer-to-peer fundraising.
6. Planned Giving and Stock/IRA Donations: Legacy giving programs including planned giving and stock/IRA donations.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels6 records

Core offering

Epilepsy Foundation New England provides free community-based programs and services to people with epilepsy and their families across five New England states, including hospital-based Resource Rooms staffed by trained community health workers, peer support groups (SHARE Groups), youth and family camps, scholarships, emergency financial aid, advocacy campaigns such as Seizure Safe Schools, and an AmeriCorps workforce program. It also funds research grants through the Blue Skies Challenge and operates as an independent regional affiliate of the Epilepsy Foundation of America.

Product overview

Epilepsy Foundation New England is a nonprofit organization offering a comprehensive suite of programs and services for individuals and families affected by epilepsy across Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont. The organization's portfolio includes camp programs (Purple Camp for kids and families), peer support groups (SHARE Groups, Young Leaders Network, Kids Connect), educational resources (Knowledge Center), support services (Resource & Support Center with financial aid, doctor referrals, patient assistance), healthcare partnerships (Resource Rooms at major epilepsy centers), workforce programs (AmeriCorps), advocacy initiatives (Seizure Safe Schools, SUDEP awareness), scholarships, research funding (Blue Skies Challenge, EQOL program), conferences (New England Epilepsy Convention), and fundraising events (walks, galas, golf tournaments). The organization operates as a platform connecting patients to resources, education, peer support, and healthcare services across New England.

Differentiator

Problem solved

Functional benefit

Products and services

• Purple Camp Summer camp programs for youth with epilepsy, including day camp, sleepaway camp, and family camp options held at locations across New England.
• Resource Rooms Epilepsy Resource Rooms staffed by trained community health workers at participating epilepsy centers including Beth Israel Lahey, Boston Children's Hospital, Boston Medical Center, Dartmouth Hitchcock Medical Center, Mass General Brigham, Massachusetts General Hospital, Tufts Medical Center, UMASS Memorial, and a virtual option.
• AmeriCorps Program Public Health AmeriCorps program recruiting and deploying paid members to serve as epilepsy resource coordinators across six northeastern states, providing community outreach and resource navigation services.
• Resource & Support Center Suite of support services including educational programs, financial aid, help finding doctors, health coverage assistance, grief support, managing epilepsy, veterans resources, Studio E expressive arts program, and patient assistance.
• Joseph's Hope Scholarship Program Scholarship program offering at least four $4,000 scholarships annually to people living with epilepsy seeking post-secondary education or vocational training.
• Emergency Aid Resources Emergency financial assistance for individuals and families affected by epilepsy facing urgent needs.
• Blue Skies Challenge Annual research grant competition awarding $75,000 grants for innovations in epilepsy diagnosis, treatment, or quality of life improvements, plus $1,000–$5,000 community engagement grants.
• New England Epilepsy Convention Multi-day annual patient and caregiver conference bringing together the New England epilepsy community.
• Seizure Safe Schools Advocacy campaign to pass legislation requiring school personnel training in seizure recognition and first-aid response, Seizure Action Plans, FDA-approved medication administration, student epilepsy education, and Good Samaritan protections.

Quantifiable outcome

• Serves 111,000 people affected by epilepsy across New England
• +3 more outcomes

Named customers8 records

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core and minor.

• Epilepsy Foundation ConnecticutcoreStrategic or Co-development Partner · 14 April 2023Epilepsy Foundation Connecticut, a separate entity from EFNE, partners under the Public Health AmeriCorps grant to serve those living with epilepsy in Connecticut, expanding the program's reach to a sixth northeastern state.
• Epilepsy Foundation of VermontcoreStrategic or Co-development Partner · 3 January 2022EFNE expanded territory to include Vermont in January 2022 to serve approximately 7,000 people affected by epilepsy, partnering with VT's epilepsy community leadership.
• Kelley Analytics, LLCminorImplementation/ SI/ Consulting Partner · 1 January 2021Independent evaluation consulting firm contracted to conduct the EQOL program evaluation across its five-year implementation period.
• Boston Medical CentercoreStrategic or Co-development PartnerClinical partner for transition program serving youth and young adults (ages 12-26) with epilepsy and co-occurring developmental disabilities, collaborating on development of transition team.

Scale indicators10 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Epilepsy Foundation of America: National umbrella organization of which EFNE is an independent affiliate. Operates broader mission, larger staff, and national programs; EFNE's regional focus is a direct subset of its disease-vertical scope.
• March of Dimes: Established voluntary health organization with comparable model of research grants, advocacy, patient education, and community-based programs. Broad incumbent operating in adjacent health-equity and federal-grant funding pools.
• National Multiple Sclerosis Society (Greater New England): Neurological disease-focused voluntary health organization with similar New England chapter, hospital partnerships, and advocacy programs. Comparable in scale, programmatic depth, and fundraising model.
• American Cancer Society (New England): Larger voluntary health organization with similar walks, gala, and community-grant programming. Comparable in revenue-mix diversification and event-driven fundraising, though at materially larger scale.
• The ALS Association (Massachusetts Chapter): Disease-focused voluntary health organization with similar model (chapters, research grants, patient services, advocacy). EFNE's incoming CEO previously led the Massachusetts chapter, indicating strong operational comparability.

Direct peers

• CURE (Citizens United for Research in Epilepsy): National epilepsy-focused nonprofit primarily funding research grants. Direct peer in disease vertical, with overlapping research grant programs (CURE Scholars) and competing for the same donor/pharma funding pool.
• Danny Did Foundation: Smaller epilepsy-focused nonprofit emphasizing SUDEP awareness and seizure monitoring device advocacy. Direct peer in disease vertical and SUDEP-advocacy space that competes for similar donor mindshare.
• Epilepsy Foundation of Greater Chicago: Another independent regional Epilepsy Foundation affiliate serving a multi-county area. Direct peer in affiliate structure, programmatic model (resource services, support groups, camps), and donor competition across the affiliate network.
• Epilepsy Foundation New York City: Northeast-affiliated Epilepsy Foundation chapter operating similar programming (support groups, Resource Connect program, advocacy). Comparable urban-adjacent market positioning and program portfolio.
• Epilepsy Foundation Connecticut: Separate Connecticut-based epilepsy nonprofit that recently partnered with EFNE under the AmeriCorps grant. Direct peer in disease focus and regional program delivery, now collaborating operationally.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks1 record

Key highlights7 records

Customer concentration

• Xx.com/EpilepsyNE
• LinkedInlinkedin.com/company/epilepsy-foundation-of-new-england

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds2 records

Investors1 record

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about Epilepsy Foundation New England