A Bear, a Book, and a Brave New Purpose

When Charlotte was diagnosed with infantile spasms at age 2, our world changed in an instant. The rarity of her condition meant that finding the right support felt overwhelming amid a sea of organizations and resources. Amidst that initial flood of options, the warmth and advocacy from communities like the Epilepsy Foundation made a difference—highlighting the importance of awareness and unified support. Yet, in reaching out to so many wonderful groups, I discovered that the true power of connection lies in their combined efforts—because we all need to work together. 

The reality is stark: there have been no new treatments for infantile spasms since the 1980s. While some children respond to existing therapies, roughly one-third of adults and approximately 20-25% of children with epilepsy are drug-resistant. Seizures persist, and families are caught in a relentless cycle of trials, errors, and uncertainty. The need for research, innovation, and better support systems is critical—yet progress remains painfully slow. 

As a mother, I soon realized that my understanding of epilepsy was only a glimpse into a much larger, complex reality. Determined to bring clarity and comfort to other families, I co-authored Char Bear Keeps Dancing with Dr. Christopher Yuskaitis and Dr. Christina Briscoe Abath. Our goal was simple: to create a child-friendly guide that eased the stress of procedures like EEGs. The heartfelt feedback—from parents sharing how the bear helped prepare their children, to medical professionals applauding its clarity—validated our efforts and inspired me to do even more. 

When I couldn’t find a stuffed animal that captured this journey, I decided to create one. Our very first bear, Waves—named after the brain waves that connect us—sparked the birth of Brave Bears Club. Today, our bears and books bring comfort to children in over 50 hospitals across the U.S., with our reach expanding into Canada, the U.K., Brazil, and soon, Italy. Every Brave Bear is a reminder that support, comfort, and a little bit of courage can make even the toughest moments a bit brighter. One child life specialist summed it up perfectly: “These bears help children feel empowered while facing procedures that are anything but easy.” 

Along the way, I also had to confront my limits. Managing a team of 30 at work suddenly became unsustainable alongside the demands of caregiving. I left a job that had once defined me because there was simply no way to balance both. Brave Bears Club evolved from a creative outlet into a mission to fill the gaps I witnessed firsthand. The fact that our first run of bears sold out within a year is a testament to the overwhelming need for this kind of support, and a reminder of how much further we still have to go. 

The Epilepsy Foundation’s renewed focus on research and innovation offers a glimmer of hope, reminding us that every step forward matters and that there is always more work to be done. One of the most impactful connections I made was with Bernice Martin Lee, CEO of the Epilepsy Foundation. She doesn’t just lead—she advocates. Her passion for expanding the foundation’s focus into research and innovation reflects what so many of us have been demanding for years: real, meaningful change. Her invitation to attend the National Epilepsy Walk wasn’t just a kind gesture; it was a reminder that while progress can be slow, every step forward is a step toward a brighter future. 

Looking ahead, I’m excited for the National Walk on March 15. I’ll be reading Char Bear Keeps Dancing with other inspiring epilepsy moms, and I can’t wait to present Bee with a Brave Bear sporting the National Epilepsy Walk logo—a full-circle moment that celebrates our journey while underscoring the ongoing need for warmth, understanding, and relentless advocacy. We’ve come a long way, but we’re far from finished. For families like mine, there’s still too much we don’t know, too many treatments that don’t exist, and too many kids facing uncertain futures. It’s time to change that—together, step by step, bear by bear. Just keep dancing.