At this year’s conference, we honored five individuals whose dedication and active participation in our mission are helping to drive advancements in the field of Dravet syndrome. Continue reading to discover more about this year’s recipients and the impact they are making for the Dravet syndrome community.
Impact & Legacy Award – Theron (Ted) Odlaug, PhD
This award is bestowed upon an individual for their outstanding leadership within DSF, acknowledging their exemplary service. The recipient serves as a role model, epitomizing qualities of warmth, authenticity, and optimism, while also leaving a lasting legacy and uplifting others. This year’s recipient is Dr. Ted Odlaug.
Ted lives in Bannockburn, Illinois, with his wife Pat. Ted has been in leadership roles at both large and small companies in pharmaceutical and biotech industries over the last 40 years. They have three adult children and four grandchildren. Their 2nd grandchild, Anna, was diagnosed with Dravet syndrome in 2018. Ted joined our Board of Directors in 2019 and currently serves as the President of the Board.
Since Anna’s diagnosis, Ted and his family have dedicated themselves to creating a positive impact, not just for Anna but for the entire Dravet syndrome community. They have put this desire into concrete action. Through their fundraising endeavors, they have raised more than $2,174,000 since 2018.
Catalyst for Change Award – Laurie Bailey and Carla Schad, MD
Our Catalyst for Change Award recognizes exemplary individuals within the Dravet syndrome community for their outstanding dedication and embodiment of DSF’s mission. This year’s recipients are Laurie Bailey and Dr. Carla Schad.
Laurie’s and Carla’s involvement with DSF dates back to their time at Zogenix, where they played integral roles in the launch of Fintepla. Following Zogenix’s acquisition by UCB, Laurie transitioned to UCB, while Carla joined Biocodex.
During their time at Zogenix, both demonstrated a dedicated effort to engage with our patient community. They actively participated in educational and fundraising events, forging connections with families. Their deepening involvement revealed to them the significant unmet needs among caregivers and siblings within our community. And, they asked how they could help to address some of these needs. They pioneered what is now known as our VIP Sibling Camp and have also brought awareness to the heavy financial and care burden on families with a loved one with Dravet syndrome.
Laurie and Carla remain steadfast advocates for our community. Even in their current roles at their new companies, they persist in amplifying patient voices and collaborating on impactful initiatives to ease the challenges of this medical journey.
Inspiring Leader Award
The Inspiring Leader Award is presented to staff or volunteers whose current contributions to DSF inspires others, and whose leadership and professional conduct serves as a role model for those working or volunteering with DSF. This year’s recipient is Erin Reoyo.
Erin and her husband Leo live outside of Seattle, WA, and are parents to Eloise and Leonel. Erin began fundraising for DSF soon after Leonel’s diagnosis in 2016. She has been a volunteer Parent Ambassador for the West region with the DSF Family Network since 2017 and helped bring Day of Dravet to Seattle in 2018.
Erin then joined our staff in 2021, serving as our Family Network Liaison. During her time on staff, she enhanced our patient services, including our Family Ambassador and Brand Ambassador Programs and our bereavement initiatives. Although Erin will be transitioning from her role at DSF to resume her work as a speech-language pathologist after this conference, she will continue to be a cherished member of our community and will be greatly missed by our entire staff.
Ciara’s Spirit of Hope Award
The Ciara’s Spirit of Hope Award is given in memory of Ciara O’Driscoll and recognizes volunteers whose dedication through service to DSF is truly outstanding and inspiring. You can read Ciara’s Story and learn about the Ciara’s Light Foundation at this link. This year’s recipient is Heather Johnson.
Heather and her husband Jim are the parents of Luella and three other children – Burke, Ashlyn and Ryker. Luella is their youngest and in August of 2010, when Luella was only 9 1/2 months old she had her first seizure. In July 2011 Luella was diagnosed with Dravet syndrome.
Heather and her family have helped spread awareness and raise funds for DSF over the years in a variety of ways in their hometown of Luverne, Minnesota. One of the most notable ways is their annul campaign, a Cake 4 a Cure. Heather’s initial goal in 2014 was to raise $500 for DSF. Now in its 11th year, this campaign has raised over $25,000 and a great deal of awareness of Dravet syndrome.
Conference sessions have been recorded and are accessible to all registered participants on demand until December 31, 2024. You can purchase a ticket for $75 to access these recorded sessions through this link. Beginning in January 2025, all recordings will be available for free on our website.
Next week’s blog post will feature a summary of sessions from Dr. Veronica Hood. We also anticipate announcing the location of our 2026 conference by January 2025, so stay tuned!
