Dear SUDC Community and Supporters,
As we enter 2026, I write to you as the President of the SUDC Foundation and on behalf of the Board of Directors, with renewed purpose and unity guided by one clear focus: the families we serve.
Speaking with one voice and one vision, the SUDC Foundation’s priority is to find answers for every family affected by Sudden Unexplained Death in Childhood (SUDC) and to build a future without SUDC.
I come to this work as the mother of Vivienne, a role that profoundly shapes me deeply and grounds me in a shared truth: every child matters, every family deserves answers, and together our work must continue to evolve and move forward.
The year ahead marks a pivotal moment for the SUDC Foundation. 2026 is a year of revitalized focus, strengthened governance, and bold, forward-looking action. We are building upon the Foundation’s strong legacy of serving those affected, while intentionally investing in what comes next, particularly in the areas of research, collaboration, and scientific rigor.
With your generous support, the SUDC Foundation has committed to fund an upward of $3 million in research to date. In 2025 alone, we invested $378,000 in the SUDC Registry and Research Collaborative (SUDCRRC), representing our largest direct program investment.
In 2025, guided by our Scientific Advisory Board, the Board of Directors voted unanimously to diversify our research portfolio. This decision resulted in funding a four-year innovative SUDC grant study for $328,133 to Danny Miller, MD, PhD, Assistant Professor in the Department of Pediatrics and the Department of Laboratory Medicine and Pathology at the University of Washington School of Medicine and Seattle Children’s Hospital and Alexandra Keefe, MD, Phd, Assistant Professor in the Department of Pediatrics at the University of School of Washington School of Medicine and Seattle Children’s Hospital in partnership with PacBio.
We are also proud to partner with Jan-Marino Ramirez, PhD. professor for Neurological Surgery and Pediatrics, University of Washington School of Medicine and Director, Norcliffe Center for Integrative Brain Research Seattle Children’s Research Institute, on a new study launching in February, while continuing to deepen our collaboration with the Robert’s Program at Boston Children’s Hospital – all in service of advancing understanding and answers for families.
We are deeply grateful for the dedication and guidance of our Scientific Advisory Board (SAB) whose expertise continues to guide impactful and groundbreaking research opportunities. In the year ahead, we will continue to expand partnerships, advance innovative research pathways, and reinforce our commitment to scientific integrity, transparency, and meaningful impact.
Since families remain at the heart of everything we do, research and support services are not separate efforts. They are deeply intertwined. The Board firmly believes that families have the right to access comprehensive case reviews, postmortem genetic testing, and clear information about all available research studies in which they may choose to participate. Every question asked, every study launched, and every partnership formed is driven by the lived experiences of families and the urgency to ensure that no one walks this path alone.
We look forward to seeing many of you in September at the 2026 Community Retreat. Together, the Board and our team recognize the importance of building meaningful connection within our community, and we continue to invest in building spaces where families feel seen, supported, and understood.
We invite you: our families, professionals, advocates, and partners, to join us as we move through 2026 with momentum, clarity, resolve, and hope. The work ahead requires all of us, united in purpose and strengthened by leadership, collaboration, and compassion.
This is a moment to come together, to align our energy, strengthen our connections, and recommit to our shared mission.
Together, we are stronger, and together, we are better.
With gratitude for your trust and partnership, and with confidence in the path forward and in loving memory of all of our children gone too soon,
Julia Burgess
President, SUDC Foundation
