Devontá Dickey is the Communications and Marketing Director at Saint Luke’s Foundation, where he leads integrated communications, media, digital strategy, and community engagement while translating resident and grantee insight into narratives and strategies that inform institutional priorities, partnerships, and investments.
When Raven Walker was a child, her doctors told her family she might not live to adulthood.
Her epilepsy was severe. Her seizures were frequent and difficult to control. The medical prognosis was bleak. But Raven survived. And rather than leave that experience behind, she built an organization because of it.
Walker is the founder of Living for Epilepsy, a Cleveland-based nonprofit that serves African American and minority communities affected by epilepsy through education, awareness, and hands-on training. It is the only organization of its kind in the region specifically centering the lived experiences of Black Clevelanders navigating a condition that affects 3.4 million Americans and carries a disproportionate burden in communities of color.
Saint Luke’s Foundation is proud to support Living for Epilepsy through our community grants program.
A Calling, Not Just a Career
Walker does not describe her work in the language of strategy or sector trends. She describes it as a calling.
“God gave me the vision to start it,” she says. “If something does not align with what God wants me to do, I am not going to do it. These are people’s lives.”
That spiritual grounding shapes everything about how Living for Epilepsy operates. Walker brings her whole self to the work, including the parts that are difficult. She was born with epilepsy. Her board president is epileptic. Many members of her team have personal connections to the condition, either through their own diagnoses or through family members who have lived with it.
That proximity to the experience is not incidental. It is the point.
“It’s better to come from somebody who actually has lived experience,” Walker says. “Who knows the challenges. What it’s like to be bullied. The self-esteem issues. Me being a woman going through different things. My mom as a mother going through that.”
The Misconception Problem
One of the most significant barriers Living for Epilepsy confronts is not medical. It is cultural.
Epilepsy is widely misunderstood. The stigma is pervasive and the misinformation travels fast. People assume that someone with epilepsy simply takes medication and moves on. They assume all seizures look the same. They assume that if someone appears functional, the condition is not serious.
Walker pushes back on all of it. 
“A lot of people overlook epilepsy because they think you just take medication and you are fine,” she says. “That is not always the case. There are different types of seizures. Some people fall and shake. Some people jerk. It is very important to educate people on what epilepsy actually looks like.”
The stakes of that education gap are real. Walker’s godfather is epileptic. At a recent event attended by thousands of people, he had a seizure. Out of everyone in the room, only three people knew what to do.
That moment is not an outlier. It is the norm.
A Compliance Gap Most Organizations Do Not Know About
Beyond awareness and community programming, Living for Epilepsy is addressing something that most organizations have never considered. Seizure first aid training and seizure action plans are mandated by state and federal law. And most organizations, including schools, businesses, and nonprofits, are not in compliance.
Walker knows this because organizations keep reaching out to her after something goes wrong. A staff member had a seizure. A student collapsed. No one was prepared.
“The last thing you want is a liability,” she says. “If something happened to a student or a kid or somebody that’s working and you’re not equipped or your company is not compliant, that’s a whole situation.”
Living for Epilepsy is working to close that gap, partnering with organizations including GCRTA and mental health facilities in the region to deliver seizure action planning support and training. Walker recently completed CPR training through Cleveland EMS and is pursuing official seizure first aid instructor certification so she can train others to respond effectively when a seizure occurs in real time.
Building Partnerships Across Cleveland
The reach of Living for Epilepsy extends across the city and into its academic institutions. Walker has delivered programming at Case Western Reserve University through the Resilient Bracelet Project, where student response was strong enough that organizers asked her to return. She is working with Tri-C, where she also serves as vice president of Student Government at the Metro Campus and is conducting a campus-wide survey on epilepsy awareness among students. She has received support from the Tri-C Foundation and formal curriculum validation from medical professionals in the neurology department.
The feedback she receives consistently reflects both the need and the appetite for this kind of work.
“Everybody has been really loving my nonprofit and really been supportive,” she says. “It’s something that’s overlooked. People are not really paying attention. But they should be paying attention.”
What Success Looks Like
When Walker talks about the future, she reaches for three words. Community. Impact. Empowerment.
She wants to build safe spaces, not just for people living with epilepsy, but for their families, their caregivers, the parents and grandparents who are navigating a diagnosis alongside someone they love. She wants to reduce stigma through open conversation. She wants to establish partnerships and programming that last, that keep bringing people together and providing real services over time.
And she wants to be a living example of what is possible.
“God just used me as the vessel,” she says. “It’s not about me. It’s about the person who was told they might not survive, who did survive, and who is now saying to someone else, if I got through it, you can too.”
Why Saint Luke’s Foundation Is Proud to Support This Work
Living for Epilepsy sits at the intersection of health equity, community education, and the kind of proximate, lived-experience leadership that Saint Luke’s Foundation believes produces the most meaningful and lasting change.
Raven Walker is not working on behalf of a community she read about. She is working from inside the experience, with the credibility of someone who has navigated epilepsy from childhood and built something real because of what she learned along the way.
Her work addresses a health disparity that is underreported, underresourced, and deeply consequential for Black Clevelanders. And she is doing it with the organizational discipline, the community partnerships, and the spiritual clarity of someone who understands exactly why this work cannot wait.
To learn more about Living for Epilepsy at info@livingforepilepsy.org or follow Living for Epilepsy’s on social media. If you or a loved one or a community member is in need of immediate need of support with epilepsy and seizures, contact the 24/7 helpline at 1-800-332-8100.
To learn more about Saint Luke’s Foundation’s community grants programs and the organizations we support, visit saintlukesfoundation.org.