July 5, 2017

One year ago, I joined Epilepsy Foundation New England as our new President and CEO. I have often described that day as one of the luckiest of my life. Not just my professional life – which, to lead an impassioned and esteemed organization such EFNE is a dream career all in itself – but also in my personal life.

Like approximately 80% of EFNE’s board and staff, I have a direct and personal connection to epilepsy. We have experienced the journey of the families and individuals we serve firsthand – each moment of heartache, happiness, help, hope… we have been there. And as the work of EFNE progresses, we are not just measuring the impact we’ve had on epilepsy numbers; we are measuring the impact we’ve had on lives - on you, on us, on each other. For that reason, I’m proud to share with you some of EFNE’s achievements over the past year.

Throughout my first year with EFNE, we have made significant strides and begun to undergo an organizational transition that will enable us to best meet the needs of those we serve. In addition to adding some new programs, we also audited and made changes to strengthen our existing services and resources. If you haven’t visited EFNE recently, you might be surprised by some the opportunities we now offer. I’d like to highlight a few of them for you below – and hope you will connect with us to learn more and get involved!

Welcoming The Matty Project – in January of 2017, The Matty Fund became The Matty Project as an initiative of EFNE. 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 EFNE programs across New England, including Camp Matty and the “My Friend Matty,” an epilepsy awareness program for children. For Rhode Island individuals and families seeking support as children grow into teenagers and adults, EFNE is now a closer resource for services and opportunities. Learn more

New Epilepsy Resource and Support Center – “Help” is at the core of EFNE. One of my first undertakings after joining the organization was to evaluate our help center – what was working, what needed to be improved. At the same time, EFNE was able to welcome our new Chief Operating Officer, Dr. Elaine Kiriakopoulos, to our staff. Dr. Kiriakopoulos, a neurologist and epileptologist, brought her extensive knowledge and clinical experience to bear in the redevelopment of this critical resource. Re-launched as we entered 2017, the new EFNE support center provides live help desk services alongside a comprehensive library of online tools and resources to educate and support individuals, families, and caregivers. In the 1st half of 2017, we’ve helped more than 1,000 people through the Center.  Access support

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. That’s why last fall EFNE launched three new programs focused specifically on engaging and empowering young adults. To-date, more than 70 individuals ages 13-29 have gotten involved in our Athletes vs. Epilepsy®, Teens Speak Up®, and Leadership Council programs. We are connecting young people to each other and encouraging our next generation of leaders. Become a leader

Tripled Camp Programs – 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 with others like them, 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. Day and sleepaway camps are available for children, families, young adults, and adults. Our Purple Summer Camps kick off on July 9, and my family and I can’t wait.  Go camping. 

Expanded Employment Services – In December, we relaunched our Employment Services program. 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. EFNE’s employment services aim to support people in their journey towards gratifying, competitive, and integrated employment. Now serving 45 people, services include assessment, coaching, workshops, job placement, and more. Also supporting these efforts, I am proud to announce that EFNE recently received a Cummings Foundation “$100k for 100” grant to establish supported job training based on employee needs and to develop strategic employer partnerships. Learn More

Leveraging Our Volunteers – Volunteers truly embody everything that EFNE stands for. From our epilepsy runs and walks to our programming and services, EFNE’s hundreds of volunteers bring passion, optimism, creativity, and experience to our organization. And they bring the human power to make it happen! We are incredibly fortunate to have them. That’s why we need to make sure we are giving them the support they also need from us. Last October, EFNE hired its first Volunteer Coordinator to work hand-in-hand with our volunteers, providing support and leveraging their expertise. Learn more.

Increased Business Development – Running the EFNE organization accounted for 9% of our budget in FY2017. The other 91% of our funds went directly into programs and services for individuals and families fighting epilepsy. Thanks to the kindness of more than 4,500 donors – up 60% from the previous year - we were able to increase our services and our impact. My goal is to increase grant-funded and business development opportunities in FY2018 and beyond. Learn more about the impact of EFNE funds in our 2017 Annual Report. 

In closing, as I move into my second year with EFNE, I am energized by the incredible team around me and the strength of those we serve. As we progress in our transition, it remains my commitment to continue to leverage the opportunities and growth of EFNE guided in the spirit of our motto: “Help for Today, Hope for Tomorrow.” I look forward to working with you as we bring it to life.

Sincerely –

Susan Linn

President and CEO