Welcome to Epilepsy Foundation New England (EFNE)! No matter where you are on your journey with epilepsy, EFNE is here to help. From parents learning their baby has epilepsy to older adults having their first seizure, and from people living with uncontrolled seizures who need daily support to improve their quality of life to people who have achieved seizure freedom, EFNE has opportunities for you.
Our team of 20 staff and 50 Community Health Workers pride ourselves on providing individualized services to meet our community needs. You are not alone, and whether you are someone who could use a friend along the path or someone who wants to give back to someone else along their journey, we are here to ensure No one needs to move through their journey alone.
As the work of the Foundation progresses, we are not just measuring the impact we’ve had on the numbers; we are measuring the impact we’ve had on lives - on you, on us, on each other.
I’m proud to share with you some of our highlights:
Emergency Financial Aid
Each year, we help about 60 families in financial crisis as a result of their epilepsy with one-time gifts of $50-$1,000. Here's what one family had to say: "I just wanted to reach out and tell you thank you, from our entire family, for selflessly working to get us help with our rent. The relief it has caused is more than welcome and needed. It helps so much more than I think you realize! And our conversation yesterday morning gave me a feeling of solidarity- it was unlike any conversation I’ve had with another parent since H. was born. It was amazing talking to someone who truly understands all of the struggles involved with parenting a child who is medically fragile. As much as I would never wish these circumstances on anyone else, it is a relief to know we are not the only ones who are going through and have gone through all of this."
Epilepsy Resource Rooms
Launched in MA in August 2020 and now advancing in all 5 of the states we serve, Epilepsy Resource Rooms are staffed by a team of Community Health Workers (CHWs) in Training, who are giving a year of AmeriCorps service at EFNE. An Epilepsy Resource Room is an area in/near an Epilepsy Center or hospital or in a virtual space, staffed by 2+ CHWs, that provides one or more of the following: Care Management, 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” whereas others have “virtual” (i.e., videoconferencing) rooms; some “rooms” may be an area in the waiting room; some “rooms” will be flexible spaces dependent on daily availability.
The pandemic taught us valuable lessons about effective communication and connection through online support groups -and made support groups much more accessible to our large geographic region with large areas of limited public transportation. Today, EFNE offers 30-60 thematic groups per month. From “Cubbies” (a program for young children) to “Silver Warriors” (a group for older adults) groups develop and evolve to address client needs. In all groups, epilepsy is not a focus but a shared experience. Our Therapeutic Groups are led by trained professionals focused on change. Our Support Groups focus on coping strategies. And our Social Groups foster connection. In all groups, members find unconditional support. Get involved here.
Our endowment, started in December 2017, has grown to $8.5 Million: The establishment of an endowment enables Epilepsy Foundation New England to invest and grow contributions from donors in perpetuity. Through the endowment, Epilepsy Foundation New England will be able to look beyond immediate funding needs and ensure that programs, interventions, and financial aid will be available to future generations. The endowment fund increases the sustainability of its programs and ensures long-term stability for Epilepsy Foundation New England.
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Proven-Effective Camping and Retreats
Our Camp Programs, Young Adult Retreats, and Adult Retreats provide important opportunities for people living with epilepsy to build community, find support, learn new skills, and have fun. Program evaluation data show that our kids camps have a very favorable impact on campers’ “having fun,” willingness to try new things and take on challenges, improving sense of self, showing respect for self and community, ability to build healthy relationships, increasing confidence to work through health challenges, and willingness to contribute to family, school, or community.
Reaching New England
The Foundation’s leadership team now includes Councils that meet monthly in RI, NH, ME, VT, Western MA, and Eastern MA. Councils provide leadership for the epilepsy community in their regions and ensure that services and strategies are attuned to each area’s unique strengths and challenges. Councils contribute to networking and community-building activities for the epilepsy community 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.
Investing in Research
Our annual Blue Skies Challenge offers researchers $75,000 grants in two categories: Innovations in Diagnosis or Treatment and Innovations to Improve Quality of Life. In addition, community members can compete for a $1,000-$5,000 grant for Community Engagement: Bringing Our Community’s Ideas to Life. The competition starts with a Letter of Inquiry due in the Fall, and ends with a Shark Tank-like Pitch Contest in Boston in March.
Supporting Grieving Families
Our #lightthewaytoday campaign raises awareness of epilepsy and shines a light on the difficult reality that epilepsy can be fatal. 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 Remembrance Network is a group of trained volunteers who have lost someone to epilepsy who are there to provide support to families when someone passes away. In the picture above, the 14-year-old girl standing immediately behind me is Faith. Three weeks after this photo was taken, Faith died of SUDEP. For resources about SUDEP, visit us here.
Together, we are helping thousands of people and families affected by epilepsy in New England, and I'm honored to work with and for each of you on our journey.
President/CEO, Epilepsy Foundation New England