Epilepsy Foundation New England Organizational Summary 2020
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 serve the approximately 104,000 people in Maine, Massachusetts, New Hampshire, and Rhode Island affected by epilepsy and the people who care for them.
Our services are designed to provide Help for Today, Hope for Tomorrow.
We provide Youth Services, including summer camps, year round programs for elementary and middle school (Kids Connect), and young adults (Young Leaders Network), as well as a scholarship program; Resource and Support Services including emergency financial aid, helpdesk, support groups, retreats, and our Remembrance Network for people who have lost someone to epilepsy; Community Education; Public Policy Advocacy; and Fundraising for Research.
In March 2020, all our services became available by videoconference and/or phone. Programs include multiple daily opportunities for children, youth, and adults to connect, regular webinars, conferences, parent education and support, and themed support groups, such as groups geared towards men. Our 2020 camp season will be virtual.
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 14 regional thrift stores.
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, Eastern 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. 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.
Program Highlights include:
Hope the Lion:
Hope reminds everyone that where there is a person living with epilepsy, there is Hope. Lions represent courage, strength, and pride. Through Hope’s positive message of resilience, we are flipping the script on epilepsy – providing comfort to children, families, and adults while raising awareness. People who follow Hope on social media participate in daily challenges and activities. Participants respond on social media with #whereishope.
Camp Programs: 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 and abilities. Program evaluation data shows 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.
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 500+ young people ages 15 to 25 in daily virtual meetings. We are connecting young people to each other and encouraging our next generation of leaders.
Epilepsy Resource Rooms:
“Help” is at the core of Epilepsy Foundation NE. Launching in August 2020, Epilepsy Resource Rooms are staffed by a team of AmeriCorps members. An Epilepsy Resource Room is an area in/near an Epilepsy Center or hospital or in a virtual space, staffed by 1-5 AmeriCorps Service Members, that provides one or more of the following: active listening and support, basic patient/family education, community information and referral services, site-based support programs (e.g., peer support group), socialization programs (e.g., youth group), a library of helpful literature, and assistance to hospital staff with site-specific needs to improve support for their patients with epilepsy, such as helping patients prepare for telehealth appointments. Some clinics may have actual “rooms;” some “rooms” may be an area in the waiting room; some “rooms” will be flexible spaces dependent on daily availability; and in the time of the pandemic, Resource Rooms will be virtual spaces.
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 every spring. Our website, www.lightthewaytoday.org, provides education and support and a place to honor our loved ones. The “Remembrance Network” supports individuals and families who have experienced the loss of a loved one due to SUDEP (Sudden Unexpected Death in Epilepsy) or an epilepsy related death. The Network is comprised of trained and supervised volunteers who have themselves lost a loved one to epilepsy and would like to share their personal experience of loss and recovery to help others through this very difficult journey. The Remembrance Network can provide direct and immediate support.