Yesterday, I experienced a full circle moment—one that reminded me just how deeply connected our stories, communities, and acts of care truly are.

My daughter gave her capstone presentation, the culmination of her K–12 journey. She did an amazing job. Her project explored the origins of paint and pigment—starting all the way back with the earliest humans. One of the images she shared was a cave drawing, simple yet powerful: hands outlined on stone.

She explained how those prehistoric handprints weren’t just art—they were storytelling. They were expressions of identity, of belonging, of community.

She paused and said, “All those hands—they represent community.” And I couldn’t help but think of our own. The one I’m lucky to be a part of every day.

Just like those early cave artists, we too are telling our story. Not with pigment on stone, but with action, advocacy, and connection.

That’s what the Boston Walk for Epilepsy is all about.

We walk to tell our stories—together.

We walk to raise our voices.

We walk to show up for each other.

This morning, I called my colleague Chanda with an urgent work question. But she didn’t answer from her desk—she was in a hospital room. Visiting a patient she’s stood by many times before. He’s fighting pneumonia, surrounded by machines. And we showed up. For him. For his mom.

That’s what our community does.

We don’t just talk about support—we live it. We walk it. Literally.

So if you’re joining us for the Boston Walk for Epilepsy, know this:

You’re part of something powerful.

You’re part of a long tradition of humans using whatever tools they have—paint, footsteps, compassion—to say:

We are here.

We are together.

And our story matters.

Can’t wait to see you on Walk day.

With strength and gratitude,

Susan

👏 Kudos This Week 👏

🎓 Celebrating Our Graduates

Join us in congratulating three EFNE community members graduating this season:

• Jen Mejia from the Celia Clinic at Boston Children’s Hospital

   

• Nitesh, a proud EFNE alum

   

• Tim from the MGH epilepsy team

We’re so proud of their accomplishments and can’t wait to see the impact they’ll continue to make.

🏠 Adam’s Resilient Journey

Six months ago, Adam was having seizures and was on the verge of losing his apartment.

Today? He’s recovering from a successful RNS surgery, has a new seizure service dog named Drummer, and is closing on a condo in Boston—all thanks to his determination, support from our network, and the power of community. He’ll be walking at Fenway this year, calling it his “second home.”

🧠 Team It’s More Than Seizures

This Boston Walk team is raising awareness for the full reality of living with epilepsy—because it’s never just about seizures. They’re walking for invisible challenges, daily strength, and a more informed world.

🦸‍♂️ Ellia’s Heroes: Three Generations Stepping Up

This story spans generations:

• Grandad Alfred, 77, a lifelong rock climber

• Uncle Cooper, age 13, brave first-time rappeller

   

Together, they’ll go over the edge at Rappel Boston for Ellia, age 9, who lives with epilepsy.

Meanwhile, Ellia will be walking at the Boston Walk at Fenway with her mom, Laura, and the rest of their amazing family: Grandma Sandra, Paw-Paw Paul, Auntie Anna, and her service dog Nelson. That’s love in motion—and unity in action.

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.