Epilepsy Foundation New England Organizational Summary 2018
Epilepsy Foundation New England 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. Epilepsy Foundation New England 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 Epilepsy Foundation New England Donation Center is an LLC of Epilepsy Foundation New England. 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 Epilepsy Foundation New England programs and services per year.
Epilepsy Foundation New England is governed by a 20-member volunteer Board of Directors. A 30-member Professional Advisory Board provides Strategy, Advice, Outreach to Epilepsy Foundation New England and act as Ambassadors for our mission. ME, NH, and RI Councils provide leadership for the epilepsy community in their regions and ensure that Epilepsy Foundation New England 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 New England; 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 New England’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:
Welcoming The Matty Project
In January 2017, The Matty Fund became The Matty Project as an initiative of Epilepsy Foundation New England. 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 New England 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 New England is now a closer resource for services and opportunities.
Growing Young Adult Leaders
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. The Young Leaders Network connects young people ages 15 to 25 in monthly meetings in Boston, Portland, and Providence. The Network focuses on leadership, advocacy, and communication skills to engage and empower young adults.
To date, more than 125 individuals ages 13-29 have gotten involved. We are connecting young people to each other and encouraging our next generation of leaders. In spring 2018, we are piloting the Kids Network for children ages 8 to 14.
Over the past year, we have tripled the size and number of our camp offerings. We believe strongly in proving camp experiences to individuals and families fighting epilepsy because we’ve seen the support it can provide both.
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. Nine day and sleepaway camps are available for children, families, young adults, and adults.
Epilepsy Resource and Support Center
“Help” is at the core of Epilepsy Foundation New England. A 2016-2017 evaluation and rethinking of our resources and supports led to a relaunch of the Resource and Support Center in 2017. The new center provides live help desk services alongside a comprehensive library of online tools and resources to educate and support individuals, families, and caregivers, and helps about 2,000 people per year.
Entering the job market after an epilepsy diagnosis can leave questions for both employers and individuals. Gaps in employment, questions of physical and medical ability, wavering self-confidence, and fear of disclosing an epilepsy diagnosis are all very real concerns.
Epilepsy Foundation New England’s Career Navigator program supports people in their journey towards gratifying, competitive, and integrated employment. Now serving more than 50 people, services include assessment, coaching, workshops, job placement, and more. In 2017, Epilepsy Foundation New England was awarded a $100,000 grant from the Cummings Foundation to support the program.
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 candle lighting on March 26, 2018 marks our first annual campaign, www.lightthewaytoday.org provides education and support.