SPARK April 15, 2025
Welcome to the second edition of SPARK, where I’ll be sharing stories, giving shout-outs, and reflecting on the strength of our community from my perspective as CEO.
Let’s break down the theme behind SPARK:
Uplift – Sharing stories that inspire and encourage
Navigate – Guiding through challenges with insights and resources
Inform – Providing trustworthy updates and knowledge
Transform – Driving change through innovation and advocacy
Empower – Giving voice and strength to every member of the community
From Susan Linn, President and CEO, Epilepsy Foundation New England
“There’s no such thing as bad weather, only unsuitable clothing.”
— Alfred Wainwright, *A Coast to Coast Walk*
In New England, we know that weather is unpredictable — and adaptability is a skill we learn. This weekend reminded us of that in classic fashion: a snowstorm on Friday had my family cozying up to a roaring fire yesterday, and by today, we were hunting for our summer wardrobes as temperatures soared into the 70s.
Living with epilepsy can feel the same. Just when you think you've settled into a routine, something shifts. A seizure rewrites your day, or a diagnosis alters your path. Epilepsy teaches us realism — and requires flexibility. It demands that we meet life where it is, not where we hoped it would be. That can be incredibly hard. But we also know this: no one does strength and adaptability better than this community.
On Saturday, more than 65 people gathered at our Empowering Women’s Conference, where Drs. Regan Lemley, Paula Voinescu, Lidia Moura, Laurie Douglass, and Preeti Gupta shared invaluable insight and strategies to prepare us for what lies ahead. We gained updated knowledge, made meaningful connections, and, most importantly, experienced what it means to be seen and supported.
When seizures occurred during the event, they weren’t met with fear — but with care, compassion, and calm. That is what community looks like.
That same day, we learned that Jenna, one of our clients, was at risk of becoming unhoused that night. Our team immediately activated our Emergency Financial Aid Program to support her, and our partners at the Hyatt Regency Cambridge stepped in to help. Because they’ve come to know our community through events like Rappel Boston, they understand that epilepsy isn’t just a medical condition — it’s a life condition. And we face it together.
As we enter a season of change — political, environmental, personal — I want you to know this: EFNE will always show up, with the right gear for the weather. We can’t always predict the storm, but we will always prepare, adapt, and face it together.
We are here for every Jenna. For every Daniel. For every person living with epilepsy and those who love them.
We are wicked strong. And we’re not going anywhere.
With gratitude,
Susan
Susan
👏 Kudos This Week 👏
Tyler Dube and Brad Hunnewell for running the Boston Marathon for our community next week.
Jordan Kloss, an EFNE Community Health Worker (CHW) serving at RI Hospital, for presenting the CHW program to the pediatric epilepsy team last week.
Dr. Lemley, Dr. Voinescu, Dr. Moura, Dr. Douglass, and Dr. Gupta for volunteering at our Empowering Women’s Conference.
The winners of the Blue Skies Challenge grants:
Dr. Trudy D. Pang & Dr. Steven C. Schachter for “Epileptic Seizure Prediction Using Non-Invasive EKG Heterogeneity.”
Dr. Christina Briscoe & team for “Innovations to Improve Quality of Life - Life Beyond Seizures: Developing SALUD.”
….and Parker, a 6th grader, whose idea of a New England Rugby Tournament in honor of her sister, won $5,000! Follow Parker on IG here!
Kudos for Showing Up.
With gratitude,
President and CEO, EFNE
Serving MA, ME, NH, RI, and VT
