President’s Welcome

Welcome!

In Fall 2019, I asked my 19 team members to complete an anonymous survey.  I asked, What is the #1 thing you think people should know about Epilepsy Foundation New England?  Unanimously, they each wrote responses along the lines of, "We are here to help people with epilepsy because we care about you and you are not alone." When I asked them, What is the #1 priority for the Foundation, they were united in their responses about Serving people - whether they work in development, business, data, volunteer engagement, or direct services. 

Like approximately 80% of our board and staff, I have a direct and personal connection to epilepsy: I work alongside my wife, Chanda Gunn, who is our Director of Youth Services and is a person living with epilepsy. Our children can be seen at Foundation camps, walks, and other events.  In the July 2019 picture above, we are at our Family Camp with 23 families and 90 people: I am in the center with the Jeep baseball cap, and my son is seated to my right. My daughter is in the black cap and overalls. Chanda, in all liklihood, is behind the camera. 

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 highlights of the past year.


Emergency Financial Aid 

In FY19, we helped 67 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."

Growing Young Adult Leaders

Juggling school, work, friends, and growing into one’s own is no easy feat for any young adult. Our Young Leaders Network is more than 300 strong with monthly meetings in cities across New England.  In September 2019, we were awarded a $250,000 grant to expand our services to children, youth, and families in NH using AmeriCorps members.  A $50,000 AmeriCorps Planning Grant and two service members are paving a similar path in MA.  

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Endowment

Our endowment, started in December 2017, has grown to $2.8 Million: The establishment of an endowment fund will enable 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 12 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.

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Reaching New England

The Foundation’s leadership team now includes Councils who meet monthly in RI, NH, ME, Western MA, and Eastern MA. Councils provide leadership for the epilepsy community in their regions and ensure that services and strategy are attuned to each area’s unique strengths and challenges. Staffed by regional Field Service Managers, 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

In March, we held our 3rd annual Innovation in Epilepsy fundraising event, showcasing the amazing work happening right here in New England, and yielding more than $100,000 to support the Epilepsy Innovation Institute.

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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. This year, we launched our Remembrance Network, 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. 

This past March, people across New England lit purple candles and participated on social media to honor loved ones lost and support those battling epilepsy. Hear what Actor John O’Hurley said about it here. 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.

Sincerely,
Susan Linn
President/CEO, Epilepsy Foundation New England

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