EFNE Organizational Summary 2018
Epilepsy Foundation New England (EFNE) is a 501 c 3 nonprofit organization whose mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. EFNE is an independent affiliate of Epilepsy Foundation of America; we serve the approximately 100,000 people in Maine, Massachusetts, New Hampshire, and Rhode Island affected by epilepsy and the people who care for them. Our vision statement is Help for Today, Hope for Tomorrow.
The services we provide are employment services; camp for children and teens; Young Leaders Network; Kids Network; Helpdesk; online resource center; retreats for adults; scholarships; emergency financial aid to people in need; community education for children, school personnel, first responders, and employers; conferences for health care providers and for families; fundraising for research; public policy advocacy; support groups; bereavement support; community connections; and, public awareness and engagement.
Established in 2009, the EFNE Donation Center is an LLC of EFNE. Thanks to a partnership with Savers, the Donation Center collects clothing and household items that are resold through 14 regional thrift stores. Proceeds fund approximately $500,0000 in EFNE programs and services per year.
EFNE is governed by a 20-member volunteer Board of Directors. A 30-member Professional Advisory Board provides Strategy, Advice, Outreach to EFNE and act as Ambassadors for our mission. ME, NH, and RI Councils provide leadership for the epilepsy community in their regions and ensure that EFNE is attuned to each area’s strengths and challenges. Staffed by regional Field Service Managers, Councils contribute to networking and community-building activities for the epilepsy community in their area; conduct outreach to help build a network of people with epilepsy and their loved ones in their area; select and help run programs and activities that engage and connect people with epilepsy and their loved ones to each other and to the Foundation; support fundraising activities such as our Walk for Epilepsy; act as ambassadors for EFNE; support advocacy work in the region/state; and work as individuals and as a Council to implement strategies that decrease the stigma of epilepsy.
EFNE’s annual operating budget is $1.8 million; this is an 80% increase from FY17. The Foundation announced an endowment of $500,000 in December 2017.
The Foundation has been under major transformation over the past two years. Major milestones that mark the resulting transformation are: