How Young Adults with Epilepsy Was Born: Addressing an Unmet Need

For those who know me, I enjoy wordplay. When I reflect on how Young Adults with Epilepsy (YAWE) began, I can’t help but think of the saying, “necessity is the mother of invention.” When we face challenges, we feel compelled to create solutions. Adding the “mother” aspect brings a powerful force into play. That's how Young Adults with Epilepsy (YAWE) came to exist.

In 2022, I was searching for something that didn’t exist—a supportive community for my young adult son and others like him. They needed a space where they could connect, find resources, and feel understood. Encouraged by his Epileptologist, Dr. Stella Legarda, I embarked on a mission to fill that void. What began as a personal quest quickly grew into something larger than I ever anticipated. In March 2023, we officially launched YAWE as a nonprofit.

Growth of YAWE: A National and International Community

Now, after just two years, YAWE has expanded into both national and international spheres. We celebrate this milestone with immense gratitude for the journey we’ve traveled together and the impact we've made.

Our mission at Young Adults with Epilepsy is reaching hearts across the globe—from Melbourne to Dubai, Santa Cruz (US & Bolivia) to Rio, Toronto to Prague, Cairo to Paris, Bristol to Dublin, Jerusalem to New Delhi, Cancun to Lagos, Makati City to Singapore, and Pretoria—showing that epilepsy knows no borders, but neither does support.

Building a Stronger Community Through Epilepsy Peer Support Groups

At the core of YAWE lies our dedication to peer support. We understand that living with epilepsy can be isolating. Connecting with those who genuinely understand the experience makes a significant difference. Over the past two years, our peer support groups, led by our “OG” Support Lead, Abby, have expanded. We are adding additional time zones and Spanish support with Teresa and Sam joining our team.

In 2024, we aim to reach over 500 young adults. This year, we plan to extend our audience even further through new peer support leads, alternative connection methods like Discord, and convenient “on-demand” content. With the addition of our Board Member, Daniel Cohen, PhD, we are also implementing rigorous measures for our peer support participants. This will help us optimize our methods and improve mental health outcomes further.

Workshops & Panels That Empower and Educate

Our monthly workshops cover topics from “Mastering Self-Care” to “Reclaiming Control & Autonomy Over Your Life.” They provide essential knowledge and tools for young adults navigating life with epilepsy. Abby has played an invaluable role in program development, ensuring we offer relevant sessions that tackle the real challenges our community faces.

One of our most significant initiatives was a panel in October, "Epilepsy and Mental Health." It featured both health professionals and young adults with epilepsy, available on Instagram Live. This panel delivered critical insights into the intersection of epilepsy and mental health, providing valuable perspectives to help the community navigate these challenges. Due to the overwhelming response, we plan more panels in 2025.

Additionally, we presented to neurologists at the California Neurology Society Conference in Santa Barbara. This event allowed us to share the patient perspective with a room full of neurologists. We will participate again at their conference this year in Sacramento.

Milestone Events: Walk 4 Epilepsy & Tee Off for Epilepsy

Bringing people together in person has been a highlight of our journey. In partnership with the Northern California Epilepsy Foundation, our Walk 4 Epilepsy was a tremendous success. Over 200 attendees came together to raise awareness and support for young adults with epilepsy. The energy, enthusiasm, and community spirit at the walk were inspiring.

We also launched our Tee Off for Epilepsy golf tournament. This event not only raised critical funds but also brought together supporters, advocates, and young adults in a fun and engaging setting. These events are powerful reminders that we are stronger together. They have expanded our reach and mission in ways we never dreamed possible.

Carpe Seizen: A Podcast BY Young Adults FOR Young Adults

Our podcast, Carpe Seizen, has emerged as a platform for powerful storytelling. It is now ranked in the top 20% of podcasts on Spotify. We’ve featured incredible guests—athletes, advocates, and young adults living with epilepsy—who share their journeys and insights. Jordan’s commitment, paired with Chelsea's production expertise, has been key to our success, ensuring authentic conversations that inspire and inform our community.

A Small but Mighty Team & Global Reach

None of this progress would be possible without our small but mighty team. Their passion and dedication drive YAWE’s growth. I’m incredibly grateful to work alongside them. With generous funding from Epilepsy Wellness Advocates, along with support from Montage Health and Catalyst Pharmaceuticals, we’ve expanded our impact. We provide essential resources and opportunities for young adults with epilepsy.

Looking Ahead: The Future of YAWE

As we enter our third year, we remain committed to expanding our reach and strengthening our programs. We will continue advocating for young adults living with epilepsy. We have big goals, and with our community's support, we know we can accomplish them.

To everyone part of this journey—our young adults, families, donors, volunteers, and supporters—thank you for believing in our mission. YAWE exists because of you, and together, we are creating a future where young adults with epilepsy feel seen, heard, and supported.

Here’s to another year of growth, impact, and community!

With gratitude,

Executive Director & Mom