SPARK April 8, 2025

What is SPARK?

Susan's Perspective And Random Kudos is a weekly update from Susan Linn of all things in the epilepsy community here in New England.

The seismic geopolitical events of the past few weeks may have you reeling, celebrating, or working through a complex mix of thoughts. The impact of recent shifts in U.S. federal policy is beginning to take shape — particularly for our epilepsy community.

 If these changes are magnified or sustained, the outlook is concerning. Federal agencies that have historically supported epilepsy-related research & services are eliminating key staff, signaling a likely pause — or even a halt — to critical federal investments in our community. Proposed Medicaid cuts could have a devastating effect, especially on low-income families and those caring for people with epilepsy and with significant disabilities. And many families may not even realize they rely on Medicaid, since it goes by different names in each state (e.g., Green Mountain Care in Vermont).

A year and a half ago, I met the Smith* family. Mr. Smith shared the story of his 25-year-old son, Daniel*, diagnosed in high school. Daniel’s once-promising college career had stalled, and he had become isolated. We offered resources and encouraged them to connect with our programs. I saw Mr. and Mrs. Smith at events after that — but not Daniel. Then, this past December, I reconnected with Mr. and Mrs. Smith, hopeful for an update. Instead, what I heard was heartbreaking. 

Epilepsy demands extraordinary strength and resilience. A three-minute tonic-clonic seizure can extract the same toll on the body as running a marathon. Families required to constantly shift plans owing to seizures, advocates bravely tell stories of SUDEP to lawmakers, and our hospitals are managing through layoffs.  Still, they show up

Resilience is the heartbeat of our community.

So it was that, on a Saturday night in January, our Vice President, Chanda, and I found ourselves in Daniel’s living room. We spent an hour connecting with Dad and at last, got the chance to meet Daniel. When we left, Chanda gave him a hug and promised, “I’m going to call you later.”  "Ok.”  Breakthrough.

A few weeks later, Mr. Smith called to say an epilepsy intervention Daniel had been looking forward to was suddenly canceled, with no reschedule in sight. Gently, “Dad, maybe now is the time to focus not just on solving epilepsy, but on helping Daniel live with it.” 

“Ok.” Breakthrough.

This is what our community does — we show up. During the pandemic, our community rose to the challenge. Many people living with epilepsy discovered that telehealth and virtual support offered more flexibility and access than ever before.

Daniel agreed to a series of our invitations. And in March, when I saw him again, I was struck by how healthy he looked. Earlier this month, I saw photos of Daniel bowling, working out, and laughing with new EFNE friends. I texted a screenshot to Mr. Smith — and he was overcome with relief. The family is going on vacation soon — their first in years.Also for the first time in a long time? 

They feel hope.

Here’s what I want you to know: EFNE will continue to be here for Daniel, for the Smiths, and for every family navigating epilepsy — no matter what changes are ahead. You can count on us more than ever for:

• Timely updates on policy changes via social media, newsletters, emails, and webinars
• Guidance on how to advocate for care and services amid shifting landscapes
• Concrete opportunities to take action
• Safe, welcoming spaces to connect, share, and strategize

Together, we remain rooted in our mission and in one another.

With gratitude,
Susan

*All names and other identifying information are changed to protect confidentiality.

Kudos This Week

• Ben Tolchin, former Chair of the New England Epilepsy Society, for bringing attention to driving laws for people living with epilepsy
• Our partners at Sail for Epilepsy who made Saturday’s gathering at the Museum of Science a success!
• Diamond Daniel, Pedi Neuro Coordinator at Boston Medical Center, where I have the pleasure of Co-Chairing the Advisory Council (shown) focused on epilepsy and autism with Shari Krauss: Diamond makes her work (and ours) look easy

• Marc Firenze, our Board of Directors Vice Chair, for securing a grant from Bentley University to support our Purple Camps.
• The volunteer judges at our Blue Skies Challenge for giving their time and talent: 
• Brandy Fureman, PhD, Chief Outcomes Officer, Epilepsy Foundation of America
• Philip Haydon, PhD, former Chair of the Department of Neuroscience at Tufts University School of Medicine and President, Sail For Epilepsy.
• Danielle Hochman, impassioned advocate, scientist, businesswoman, and mom. 
• Darlene Wilson, Global Clinical Operations Program Director at AstraZeneca, and mom.
• And finally, to Daniel and his parents, and ALL the Smith families out there: 

Kudos for Showing Up.

With gratitude, 

Susan