It was an absolute privilege to sit down with Brad Levy, the driving force behind Sophie's Journey and Epilepsy Awareness Day at Disneyland (EADDL), for a truly inspiring conversation on the Sunstone Health Podcast recently. His story, born from a deeply personal experience with his daughter Sophie's epilepsy, is a testament to the power of dedication, community, and the relentless pursuit of better care. At TMA Precision Health, we are incredibly proud to be a little part of his remarkable mission, joining him this year at Epilepsy Awareness & Education EXPO presented by Sofie’s Journey.
What began 14 years ago as a way to give back to the epilepsy community has blossomed today into an annual event that brings together thousands of families, top medical professionals, and cutting-edge resources. From a modest gathering of 875 people at Disneyland, EADDL is now expecting 6,000 guests this year, a truly astounding achievement!
What makes EADDL so special, and why we at TMA Precision are so enthusiastic about our involvement is it's the unique blend of high-level education and an incredibly supportive, approachable environment. Brad and his team meticulously curate the educational content, ensuring that only epileptologists, epilepsy-trained neurosurgeons, ketogenic diet specialists, and highly experienced nurse practitioners from Level 4 epilepsy centers present. This commitment to expertise means families receive the most accurate and up-to-date information on everything from basic epilepsy care to advanced therapies like stem cell and RNA gene therapy, and clinical trial opportunities.
Epilepsy Awareness & Education EXPO presented by Sofie’s Journey serves as a vital support system, far exceeding the scope of a typical medical conference. Often after years of searching for answers families show up with binders full of medical records and timelines, eager to engage directly with doctors. These informal consultations are invaluable. Doctors, who generously volunteer their time, are there to listen, review cases, and offer suggestions that can truly change a patient's trajectory. This direct interaction breaks down the traditional barriers of a doctor's office, fostering a sense of hope and empowerment for families.
One of the most impactful aspects of EADDL is its ability to connect families with the resources they desperately need. Brad acts as a "dot connector," triaging cases and building personalized itineraries for attendees. He guides them to relevant presentations and introduces them to specialists, foundations, and even pharma companies conducting clinical trials. This "super highway" to care, as Brad calls it, is crucial in a world where each epilepsy patient's journey is unique and often complex.
Our own connection with Brad and EADDL began with a shared passion for advancing care, particularly through whole genome sequencing. As Brad put it, "Anyone who's advancing whole genome sequencing for kids, I will get behind 100%." This resonated deeply with our mission at TMA Precision Health to provide comprehensive genetic testing, including whole genome sequencing and trios, to uncover the underlying causes of epilepsy. We believe that having a complete genetic roadmap is essential for making informed decisions and finding the right path forward, avoiding the "long and winding road" of incremental testing.
The "mom and pop" aspect of EADDL, as Brad describes it, is precisely what makes it so powerful. It's not a formal, stuffy academic conference. It's a place where doctors wear purple t-shirts and are approachable, showing the human side of medicine. And the setting at Disneyland? It's pure genius. After two days of intensive learning and connection, families get to spend a day enjoying the magic, offering a much-needed reprieve and a chance to simply be a family. This holistic approach, addressing both the medical and emotional needs of families, is why EADDL has become such an impactful and cherished event.
We are incredibly excited to be at Epilepsy Awareness Day at Disneyland next month, ready to support Brad's mission and connect with families. It's a privilege to be part of a community that truly cares, and we look forward to contributing to the ongoing journey of hope and healing that Brad Levy and Epilepsy Awareness Day represent.