Epilepsy Foundation New England Organizational Summary 2019
Enabling a Circle of Support
Established in 1983, Epilepsy Foundation New England is a 501 c 3 nonprofit organization whose mission is to help people and families affected by epilepsy in New England. Epilepsy Foundation NE is an independent affiliate of Epilepsy Foundation of America 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. We work to 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 camp for children and teens; youth programming; employment services; 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 Epilepsy Foundation NE. Thanks to a partnership with Savers, the Donation Center collects clothing and household items that are resold through 15 regional thrift stores. Proceeds fund approximately $500,0000 in Epilepsy Foundation NE programs and services per year.
Epilepsy Foundation NE is governed by a 20-member volunteer Board of Directors. A 30-member Professional Advisory Board provides Strategy, Advice, Outreach to Epilepsy Foundation NE and act as Ambassadors for our mission. Western MA, ME, NH, and RI Councils provide leadership for the epilepsy community in their regions and ensure that Epilepsy Foundation NE 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 Epilepsy Foundation NE; support advocacy work in the region/state; and work as individuals and as a Council to implement strategies that decrease the stigma of epilepsy.
Epilepsy Foundation NE’s annual operating budget is $1.8 million. The Foundation announced an endowment in December 2017. The Foundation has experienced major transformation over the past three years. Major milestones include:
We have quadrupled the size and number of our camp offerings (now numbering 15 in all states). Camp affords individuals with epilepsy a chance to have fun in an environment designed for them, to make friends, and to build their own confidence in their abilities. For families, it brings them together with others connected to epilepsy and provides an opportunity for new experiences with their loved one. Camps include a wide variety of offerings for ages, abilities, and locations. An extensive 2018 program evaluation found that Purple Camps help participants have fun; try new things and succeed at taking challenges; have a better sense of self and his/her abilities; show respect for self, others, and community; build healthy relationships and demonstrate empathy; be more confident in ability to work through health challenges; and contribute to family, school, or community.
Epilepsy Resource and Support Center
“Help” is at the core of Epilepsy Foundation NE. The new Center includes more than 40 dial-in and inperson support groups, individualized help desk services for 1,500+ per year, scholarships to more than a dozen students pursuing higher education, emergency financial aid to more than three dozen families a year, as well as a comprehensive library of online tools and resources to educate and support individuals, families, and caregivers. Our Remembrance Network, launched in 2018, is comprised of trained volunteers who have lost a loved one due to epilepsy, who offer support to other families in their time of loss. Epilepsy Foundation NE’s Career Navigator program supports people in their journey towards gratifying, competitive, and integrated employment. In 2017, Epilepsy Foundation NE was awarded a two-year $100,000 grant from the Cummings Foundation to support the program, and since that that time, we have served more than 130 people.
Young Leaders Network
Juggling school, work, friends, and growing into one’s own is no easy feat for any young adult. It can be even tougher for those living with epilepsy. Started in 2017, today, the Young Leaders Network connects 275+ young people ages 15 to 25 in monthly meetings in seven New England cities. We are connecting young people to each other and encouraging our next generation of leaders.
The Matty Project
Welcoming The Matty Project: In January 2017, The Matty Fund became The Matty Project as an initiative of Epilepsy Foundation NE. The Matty Fund, established by Richard and Deb Siravo after the passing of their 5 year-old son, Matty, from a prolonged seizure, was a success in its own right, connecting children and their families to epilepsy support and services throughout Rhode Island. Through The Matty Project, we are now able to integrate these invaluable community-focused elements into Epilepsy Foundation NE programs across New England, including Camp Matty and the “My Friend Matty” curriculum, an epilepsy awareness program for children. For Rhode Island individuals and families seeking support as children grow into teenagers and adults, Epilepsy Foundation NE is now a closer resource for services and opportunities.
Leveraging Our Volunteers
Volunteers truly embody everything that Epilepsy Foundation NE stands for. From our epilepsy runs and walks to our programming and services, Epilepsy Foundation NE’s hundreds of volunteers bring passion, optimism, creativity, and experience to our organization. And they bring the human power to make it happen! Volunteers now approach 400 giving individuals.
Light the Way Today
Each year, more than 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from Sudden Unexpected Death in Epilepsy (SUDEP); the risk increases to 1 in 150 for people whose seizures are poorly controlled. Our #lightthewaytoday raises awareness of epilepsy and shines a light on the difficult reality that epilepsy can be fatal by encouraging actual and virtual candlelighting on March 26. Our website, www.lightthewaytoday.org, provides education and support.