It Started with Back Pain SPARK April 23, 2025
Last fall, after a fun Labor Day weekend outdoors, I noticed a dull ache in my back. Nothing serious at first — until it grew into something more intense, eventually leaving me in real pain and limiting what I could do.
I wasn’t sure what had caused it. I wasn’t even sure where it hurt exactly — the pain shifted, it radiated. I got all kinds of advice:
“Ice it!”
“Heat it!”
“Immobilize it!”
“Don’t immobilize it!”
I tried everything: massage, acupuncture, hydrotherapy, medication, yoga, a standing desk, chiropractic care. Two months in, I saw my primary care doctor. We decided to “keep an eye on it.” Six months later, an MRI showed some typical middle-aged wear and tear. Nothing conclusive. I was offered three different referral options
Which one should I take? I didn’t know — and I didn’t know who to ask.
Frustrating.
Then I found Lisa — a massage therapist tucked away in the fifth place I tried. She listened, assessed, and said, “I think I know what’s going on.” And you know what? Two months later, I was 90% better.
When Answers Are Hard to Find
When a person is newly diagnosed with epilepsy, they’re suddenly faced with a whirlwind of information, decisions, and emotions. No one is prepared for the journey — not them, not their loved ones.
That’s why our Community Health Workers (CHWs) — AmeriCorps Service Members trained in epilepsy support — are so important. They serve as guides for families navigating epilepsy in the Northeast, offering trusted information, community connections, and a steady hand when the path is uncertain.
My back pain journey is nothing compared to what families navigating epilepsy go through — but it reminded me what a difference it makes to find the right person to help.
Someone who listens.
Someone who understands the nuances.
Someone who knows what questions to ask — and what really matters.
What Happens After “Epilepsy” Is Spoken Aloud?
Think back: When you first heard the word epilepsy, did you know what it meant? Did you understand seizures?
Families affected by epilepsy often become “experts” in their loved one’s condition out of necessity — but they shouldn’t have to go it alone. Our CHWs connect families with educational workshops, trusted resources, and most importantly, each other.
📅 Save the Date
September 4–6, 2025 | Cambridge, MA
People with epilepsy and caregivers welcome.
Navigating epilepsy — from diagnosis to daily life — is rarely a straight road. It can take years to get the right diagnosis. Medications change. Side effects emerge. Families adapt, learn, and advocate every step of the way. It can be isolating and exhausting — and yet, our community is full of strength, resilience, and wisdom.
What the Epilepsy Journey Really Looks Like
The epilepsy journey is rarely linear. There are twists, turns, setbacks, and breakthroughs:
Getting the right diagnosis
Trying (and switching) treatments
Managing side effects
Finding the right care team
Navigating school, work, and daily life
At every step, EFNE is here. With trusted information. With human connection. With people who understand.
Today, I’m back to trail running — a gift I don’t take for granted. And as I run, I think of the families who don’t yet have their “Lisa” — but who are finding guidance, compassion, and clarity through our CHWs.
Thank you to every Community Health Worker. You are changing lives.
With gratitude and strength,
Susan
👏 Kudos This Week 👏
We’re proud to recognize just a few of the individuals and moments that made this past week shine:
Dr. Felicia Chu — whose leadership has paved the way for the EFNE + UMass Family Education Conference in Worcester, MA. Thanks to EFNE CHWs Faythe McCarthy and Liana Chip, our third year co-producing this event promises an exciting evening of education and giveaways.
Johnny Chadoyan — EFNE CHW, who has been hired as a Medical Records Assistant in Providence. He’ll begin this new role after completing his service with us this spring.
Jennifer Cardillo — Citizens Bank, Sr. Project Manager & EFNE Board Member, who visited with CHWs and staff across Southern New England last week at West Elmwood Housing Corp, where former EFNE CHW Bruce Thompson showed how his service with EFNE helped launch his career.
Jennifer DeSellier — EFNE CHW graduate, who began a new role as Research Specialist in the Neurology Unit at Dartmouth Hitchcock Medical Center.
Ashley Danjou— EFNE CHW, who graduated from our CHW Certificate program and is now serving in her new role as Service Coordinator at Gateways Community Services.
Tyler Dube and Brad Hunnewell, who ran the Boston Marathon for EFNE this past Monday. Your awareness-raising and fundraising mean the world to us. Thank you.
To the U.S. Senators who continue to support AmeriCorps funding for programs like ours — thank you. While the federal government recently reduced funding for some parts of AmeriCorps, the funding that sustains EFNE’s Community Health Worker program remains intact.
Sen. Sheldon Whitehouse (D-RI)
On Friday, EFNE staff, CHWs, and volunteers gathered in four locations across the region: Providence, RI; Lowell, MA; Springfield, MA; and Hanover, NH.
Pictured, three of our Community Health Workers reflect on the essence of their service to people with epilepsy and their families:
Ariel Hyunseo Kim, serving at Mass General Brigham
Jazlynn Leung, serving at Boston Medical Center
Kaitlyn Currie, serving Southern Maine
Each of these CHWs brings compassion, knowledge, and lived experience to their roles — and continues to show up for our united community every day.
💌 Have 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 third 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 stron
