The Byrne Event originated in the summer of 2021, and started as a grassroots fundraiser, to sponsor the Agape Foundation and T-Bone’s Triathlon, to help fund research for Down’s Syndrome at Children’s Hospital Los Angeles. Local Manhattan Beach and Hermosa families gathered together in the Hill Section home of Maureen and Barry Ryan and over $40,000 was raised that evening.

 

The Agape Fund has so far supported two projects focused on Down syndrome, with more than $100,000 in donations. Most significantly, the Agape Fund has supported Dr. Jonathan Santoro at Children’s Hospital of Los Angeles, who has launched the first-ever clinical trial in Down Syndrome Regression Disorder after receiving funding from the National Institute of Health (NIH) for $5.3M.

 

Secondly, the Agape Fund supported Dr. Dan Gordon at Anglia Ruskin University in Cambridge, United Kingdom, in his Mindsets study, an 8-week research study to scientifically quantify how much physical exercise affects mental fitness in individuals with Down syndrome. They have discovered many things through this process, though what stands out is the increasing potential efficacy of Dr. Santoro’s experimental treatment protocol that includes high-dose steroids and immunotherapy, called intravenous immunoglobulin (IVIG) for the treatment of Down syndrome Regression Disorder. This treatment is the cornerstone of his clinical trial with the NIH, and we are hopeful for positive results from the study.

 

The organization was founded by Manhattan Beach local John Byrne, whose brother Thomas is one of Dr. Santoro’s patients. John believes that by allocating philanthropic dollars to research focused on the conditions that Thomas experiences, we can potentially unlock a leverage point in a rather complex healthcare system. If we can support those on the front lines of ground-breaking research like Dr. Santoro about Down Syndrome Regression Disorder, the potential outcomes from that research may provide a greater long-term impact now and for decades to come, to a community so deserving of our attention.

 

In 2022, the event moved to American Martyrs O’Donnell Hall, as its success had outgrown the space, and this year, the 3rd Annual “Byrne” Event will be held in the Hill Section home of the Baumer Family on August 12, 2023. Please contact Johnny Byrne @ 310-944-4834 or atjohnbyrne@gmail.com for tickets or sponsorship opportunities.