Beyond the Diagnosis: Changing Lives Across the Region
Connecting people with the support they need today while building a future with better care, stronger communities, and new possibilities for people living with epilepsy.
For someone living with epilepsy, a diagnosis is only the beginning of the journey. Access to appropriate medical care is essential, but it is not always enough to address the challenges that shape daily life. Transportation barriers, financial hardship, social isolation, difficulties at school or work, and uncertainty about where to find reliable information can make an already complex condition even harder to manage.
Across New England, Epilepsy Foundation New England (EFNE) works to address these challenges through a comprehensive approach that brings together direct services, community education, youth development, advocacy, and research. Our mission is grounded in a simple but important idea: people affected by epilepsy deserve support for the challenges they face today and hope for a better tomorrow.
Established in 1983, EFNE serves people with epilepsy and their families throughout Massachusetts, New Hampshire, Maine, Vermont, and Rhode Island. Our work reaches beyond raising awareness of epilepsy. We connect individuals to practical resources, help families navigate complex systems, create opportunities for young people to thrive, and support advances that improve epilepsy treatment and care.
The results reflect the breadth of that commitment. EFNE served 25,000 people across the five-state region in 2025. Behind that figure are individuals and families with different circumstances, needs, and goals—and a network of programs designed to meet them where they are.
Making Support Personal: Care Management and Community Health Workers
One of EFNE's defining approaches is our use of individualized Care Management. Through one-on-one relationships with Community Health Workers (CHWs), people with epilepsy and their families receive help identifying resources, navigating challenges, and working toward goals that matter in their daily lives.
The need for this kind of support is easy to overlook when healthcare is viewed primarily through the lens of diagnosis and treatment. A person may have access to a neurologist but struggle to get to appointments. A parent may understand a child's treatment plan but need help finding educational resources. Another individual may be dealing with financial pressure while trying to maintain consistent care.
EFNE's Community Health Workers help bridge the gap between healthcare and the practical realities of everyday life. They work with clients to identify needs, explore community resources, and develop individualized plans. Support may involve transportation, healthcare access, financial assistance, education, employment, or connections with others who understand the experience of living with epilepsy.
The model is built around listening and collaboration, rather than assuming that every person needs the same intervention.
EFNE also places Community Health Workers in hospital-based and virtual Epilepsy Resource Rooms, where people can access education, referrals, and additional support alongside their healthcare experience.
The value of this approach extends beyond the individual. Our 2025 Annual Report found that 78% of surveyed respondents from CNDC and 82% from Mass General Brigham considered EFNE's services helpful or very helpful in improving care for patients with epilepsy.
These findings offer an encouraging indication that community-based support can complement clinical care and help address needs that might otherwise go unmet.
Responding When Financial Hardship Threatens Stability
Epilepsy can create financial challenges that have little to do with the cost of a single medical appointment. Families may face competing expenses, unexpected disruptions, or difficult choices between essential needs.
In these circumstances, timely assistance can matter enormously.
EFNE provides emergency financial aid to help members of the epilepsy community experiencing urgent short-term hardship. More than $19,200 in emergency aid grants were awarded in 2025.
This form of assistance addresses an immediate need while recognizing that financial stability is closely connected to a person's overall well-being. For a household facing a crisis, access to appropriate assistance and guidance may help create room to address other challenges.
Emergency aid is one part of a broader support system that includes Care Management and connections to community resources. Together, these services give individuals and families more ways to seek help when circumstances become difficult.
Helping Young People Build Confidence and Connection
Children and young adults with epilepsy deserve opportunities to learn, develop friendships, explore their interests, and build confidence in who they are.
Yet epilepsy can introduce concerns that other young people may not encounter. Parents may worry about safety and inclusion. Young people may feel misunderstood by their peers or uncertain about how to navigate school and social situations.
EFNE's youth programs create opportunities for connection and growth in an environment that recognizes these experiences.
EFNE also offers a scholarship program as part of youth services. The Joseph's Hope Scholarship Fund has awarded more than $320,000 in scholarships to 170 students in the last ten years.
These initiatives reflect an important dimension of epilepsy support: improving quality of life means creating opportunities, not simply responding to difficulties. Young people should have room to grow, discover their strengths, and imagine futures that are not defined by a medical diagnosis.
For families, these programs can also provide a sense of community and the opportunity to connect with others who understand their experiences.
Building Knowledge and Safer Communities
A more supportive environment for people with epilepsy depends partly on what others know and how they respond.
Teachers, school nurses, employers, caregivers, and community members may encounter someone experiencing a seizure without knowing what to do. Accurate information and practical training can help people respond appropriately and reduce unnecessary fear.
EFNE provides community education, including seizure first aid training and educational opportunities for people affected by epilepsy. Through these efforts, the organization helps make knowledge more accessible to the people who may need it most.
Education also supports broader inclusion. When schools and workplaces better understand epilepsy, they are better positioned to address questions about safety, participation, and accommodations.
Our advocacy work complements this education by addressing policies that affect access to healthcare, disability rights, education, employment, and quality of life. Working across the five-state region, we are advocating for changes that can improve conditions for people with epilepsy and their families.
This combination of education and advocacy recognizes that lasting progress requires both informed communities and systems that respond to people's needs.
Investing in Research and the Future of Epilepsy Care
While practical support remains essential, EFNE also invests in the long-term goal of improving epilepsy treatment and quality of life.
Through the Blue Skies Challenge, the organization supports research and innovation in New England. Research initiatives include opportunities for investigators to advance ideas related to diagnosis, treatment, and improvements in daily life for people with epilepsy.
Research can take years to translate into changes that reach patients. Nevertheless, supporting promising work today helps sustain the search for better treatments, improved safety, and new approaches to care.
EFNE's research investment sits alongside the direct services as part of a broader vision: meeting current needs while contributing to a future in which people affected by epilepsy have better options.
The organization also works to strengthen the community workforce through the Community Health Worker Certificate Program, which combines classroom instruction with supervised practical experience. This investment helps prepare individuals for roles supporting health and well-being in their communities.
Taken together, these initiatives demonstrate how direct service, workforce development, and research can contribute to a more connected and responsive support system.
Measuring Impact Through the Experiences Behind the Numbers
Program statistics help show the reach of a nonprofit's work, but they are most meaningful when considered in the context of the needs they address.
The 25,000 people served in 2025 represent a wide range of experiences. Some people may need help navigating resources after a new diagnosis. Others may benefit from ongoing support, opportunities for social connection, or assistance during a period of financial hardship. Families may turn to the organization at different stages of their journey, with priorities that change over time.
A comprehensive approach makes it possible to respond to these different needs without reducing the experience of epilepsy to a single service or intervention.
Our programs also connect different levels of impact. One-on-one support helps individuals navigate immediate challenges. Youth programs foster connection and development. Community education increases understanding. Advocacy seeks improvements in policy and access. Research investment supports the pursuit of better treatments and care.
These activities reinforce one another, creating a model that addresses both the immediate realities of living with epilepsy and the conditions that shape long-term outcomes.
Continued evaluation will be important in understanding which approaches are most effective, where unmet needs remain, and how services can grow to reach more people.
The Opportunity to Expand What Works
The challenges associated with epilepsy do not end at the clinic door. Meeting them requires collaboration among healthcare providers, community organizations, researchers, advocates, families, and philanthropic partners.
EFNE has developed a regional network of programs that connects these parts of the support system. Our work offers a practical framework for addressing immediate needs while also investing in the relationships, knowledge, and research that can contribute to longer-term progress.
Philanthropic investment can help organizations strengthen that foundation, respond to emerging needs, and explore opportunities to extend effective programs to more individuals and families. For EFNE, future opportunities may include expanding access to individualized support, strengthening youth and family programming, improving the reach of education and advocacy, and sustaining research that advances epilepsy care.
Understanding those opportunities begins with listening to the communities being served, reviewing program outcomes, and identifying where additional resources could make a meaningful difference.
Help for Today. Hope for Tomorrow.
Epilepsy Foundation New England's work is rooted in the understanding that meaningful progress has more than one dimension. People need access to information, resources, and compassionate support now. Families also deserve investment in research, stronger systems of care, and communities where epilepsy is better understood.
By bringing together personalized assistance, youth development, emergency support, education, advocacy, and research, we work toward both goals.
The 2025 results demonstrate the reach of that commitment. The continuing opportunity is to build on that foundation, learn from the people the organization serves, and help more individuals and families find the resources and opportunities they need.
Learn more about Epilepsy Foundation New England's programs, impact, and mission at epilepsynewengland.org.
For additional information about our work and financial accountability, visit the organization's annual reports and financial statements.