Yesterday, I set out for a run—underprepared and distracted.

I had my three dogs but no water, no wallet.

Phone and watch accompanied me.

Twenty minutes in, both devices died.

I looked around and realized: I didn’t know which path would lead me out.

Panic started to rise—until I paused.

I reminded myself: panic won’t help.

I’ve made it through five decades. I can get through this too.

I used my memory, the sun, and a few deep breaths to gather myself and find my way back.

But in that moment, it struck me: I’d prioritized the dogs’ needs—again—over my own.

Sound familiar?

Many of us—parents, caregivers, professionals—habitually put everyone else first.

That habit can slowly chip away at our well-being.

A Moment of Reflection

Alone in the woods, without noise or notifications, I found a kind of peace.

I had space to reflect:

• On the days behind me.

• On the week ahead.

• And on how I want to move forward—in purpose, in care, in community.

That evening, I attended the Alvin Ailey Dance Theatre performance in Boston.

My playbill opened to a quote by Hope Boykin:

“Finding Free is not the absence of trials but the ability to carry weight, gaining the strength to endure.”

That line stayed with me.

We are all carrying weight—but we are also enduring, adapting, showing up.

We will find our way through this rapidly evolving landscape.

Especially in our work supporting people with epilepsy:

We have and will carry the weight.

We have and will endure—providing Help for Today and Hope for Tomorrow.

Reflections to Carry Forward

My dogs and I made it out of the woods unscathed yesterday.

By the time I reached my car, I chose to leave my devices off.

I wanted to carry that clarity forward—and share a few reflections with you:

Self-care is not optional.

Whether you’re managing epilepsy, caring for someone who is, working in healthcare, or leading through change—you matter. You cannot support others without supporting yourself first.

Silence makes space for insight.

In a world full of noise, unplugging lets creativity and resilience rise to the surface. Even a short walk can renew you.

Offer yourself the same grace you’d give a loved one.

Would you expect your child to carry what you carry, without rest or compassion? Extend that grace to yourself.

In the Spirit of Endurance

We are navigating hard times, but you are here—and that matters.

I’m reminded of Amber Lee Carroll, who lost her battle with epilepsy in 2016.

Her mother Tracy often recites Amber’s favorite quote:

“Everything will be okay in the end. If it’s not okay, it’s not the end.”

Thank you for walking this path with us.Warmly,

Susan

👏 Kudos This Week 👏

📚 Scholarship Reminder!

EFNE’s annual scholarship application deadline is May 1! Huge thanks to our Scholarship Committee for carefully reviewing each application and making thoughtful decisions that help change lives.

Frank Salituro

Vicky Salituro

Michelle Salituro

David Price

David Walls

Janice Walls

Laura Powis

Fred Gross

Carrie Randall

💜 KudosBomb from VP Chanda

“I received three emails this week from people living with epilepsy who said they don’t currently need services — but want to give back and help others. That’s the power of community. Thank you!”

🎿 Thank You to Vermont Adaptive

Big thanks to Felicia Fowler, Demery Coppola, and Allie Kaye from Vermont Adaptive for meeting with EFNE to explore new ways we can make skiing and snowboarding more accessible for people living with epilepsy. We’re already looking forward to our third annual EpilepSki in 2026!

📣 Josh Miner’s Inspiring Journey

A special shoutout to Josh Miner, who presented a poster at an academic conference in Tennessee this month! We first met Josh in 2016 at Purple Camp, just after his family received his diagnosis. From camper to Young Leaders Network member, Josh has become family — and even moving away from the Northeast hasn’t changed that. His mom, Alyssa, created a bracelet fundraiser inspired by Josh’s slogan:

“EFNE — the F stands for epilepsy.”

Josh’s story is a powerful example of resilience, growth, and connection.

Support Josh’s fundraiser

🧠 Digital Media Shoutout

If you’re staying informed through EFNE’s newsletters, website, or social media, thank Matthew Siden and his team at Nugget Island. As a person living with epilepsy himself, Matt’s work ensures our messaging stays clear, inclusive, and connected to the community we serve.

💬 Got a Kudos to Share?

Know someone in the EFNE community who deserves a shoutout?
Email Susan with your suggestion — we’d love to celebrate them!

Thank you for reading this edition of SPARK — a space where I share stories, highlight voices, and reflect on the strength of our EFNE community.

SPARK is guided by five core values that shape everything we do:

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

Until next time, thank you for being part of what makes this community so strong.