Race for Every Child 2024

Fighting FIRES with Owen
Fighting FIRES with Owen

Fighting FIRES with Owen

Welcome to our Race for Every Child 2023 team page! We are so excited for our 3rd year of  Team Fighting FIRES, but this year we are Fighting FIRES WITH Owen (and launching a fun new logo) as this team is to support all children and their families fighting refractory epilepsy syndromes!

In July of 2021, Owen was admitted to Children's National Hospital (CNH) for over 100 days after having a mild cold that triggered an autoimmune encephalitis attack to his brain. Thanks to Dr. Elizabeth Wells's expertise around encephalopathy, Owen was quickly diagnosed with Febrile Infection-Related Epilepsy Syndrome (FIRES) and the team began life saving measures to stop Owen's brain from continuing in "status". Owen sustained hundreds of seizures, was intubated and placed in a coma for over a month and spent subsequent months recovering from his acute onset in the PICU and the Neurology acute care unit of Children's National Hospital.

There are still a lot of unknowns for Owen, but his outcome so far is a rarity of this rare diagnosis. FIRES attacks previously healthy children after a mild infection and outcomes vary but are catastrophic for many and leave most severely disabled, battling a lifetime of refractory status epilepticus. 

The vision for the FIRES research is to accelerate clinical research and advance care with a philanthropic funding need of $2.5 million to conduct the first multi-site clinical trial for FIRES. Our long-term goal is to lead a clinical trial to evaluate the role of molecular profiling to determine individualized treatment plans for FIRES patients.

Help us create a fund to further the research and collaboration between medical institutions to ensure better outcomes for future FIRES families and their children. As well, help support those hospitals who have never seen nor treated a FIRES patient ensure they have the reach to the right experts at CNH and resources to prevent the devastation that comes with not acting fast enough when FIRES acute onsets occur.

For corporate matching gift individual should submit their matching gift form in accordance with companies' internal processes/policies with special instructions to note "Fight FIRES with Owen" on the form to ensure that the matching portion is applied to the FIRES research fund. Individuals should send a copy of the completed form to the Children's Foundation via matchinggiftinfo@childrensnational.org

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Fighting FIRES with Owen

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