2025 Global Conference
2025 ZTTK Global Community Conference
Our inaugural gathering brought the worldwide ZTTK community together for two transformative days of science, connection, and hope.
By the Numbers
Conference Highlights
180+
Attendees
Families, researchers, clinicians, and partners
14
Sponsors
Corporate and community partners
2
Days
Science Day + Family Day programming
12+
Speakers
Leading researchers and advocates
About the Event
Where the ZTTK Community Came Together
The inaugural ZTTK Global Community Conference brought together over 180 families, researchers, clinicians, and industry partners for a landmark two-day event at The Royal Sonesta Boston Hotel in Cambridge, MA. For the first time, the ZTTK community gathered under one roof to share the latest research, build lasting connections, and chart a shared path forward.
Day one focused on science and research, with presentations from leading investigators studying SON gene function and potential therapeutic approaches, closing with a research panel discussion. Families heard directly from the scientists working toward treatments, and researchers gained invaluable insights from the lived experiences of ZTTK families.
Day two centered on family connection, featuring panel discussions, caregiver support sessions, and community-building activities. Many families met in person for the first time after years of connecting only online, turning digital friendships into real relationships.
Memories
Conference Photos
Thank you, 2025!
The full conference community, together in Boston — plus virtual participants.
Research Session
Science Day — presenting the latest ZTTK genetics research.
Full House
Families and researchers together for a Science Day session.
Uniting Families, Funding Research
Free conference T-shirts for attendees.
Celebrating Our SON-Shines
A community birthday cake at the conference.
The Royal Sonesta, Boston
Conference programming signage at the venue, August 10, 2025.
Day 1 — Science & Research
Featured Speakers
Ada Lio
Executive Director, ZTTK SON-Shine Foundation
Welcome Address
Neena Nizar, PhD
Patient Advocacy Leader, The Jansen’s Foundation, ICON
Keynote: From Patient to Change-Maker
Raymond Belanger Deloge, MS, CGC
Translational Genomic Medicine Specialist, Boston Children’s Hospital
Introduction to Genetics
Erin Ahn, PhD
Lead ZTTK Researcher, University of Alabama at Birmingham
ZTTK syndrome Research Overview
Elli Brimble, MSc, MS, CGC
Head of Clinical Strategy, Citizen Health
Patient Data in Research
Richard Novak, PhD
CEO & Co-Founder, Unravel Biosciences
Drug Development Partnerships
Maya Chopra, MBBS, FRACP
Boston Children’s Hospital
Research Panel Discussion
Tim Yu, MD, PhD
Boston Children’s Hospital
Research Panel Discussion
Nathan Guo
ZTTK Dad & Patient Advocate (Moderator)
Research Panel Discussion
Day 2 — Family Day
Family Day Highlights
Shannon Boyle
President, ZTTK SON-Shine Foundation
Opening Remarks
Jennifer Siedman, MEd
Courageous Parents Network
Centering Your Good
ZTTK Families
Community Panel
Family Panel Discussion
Kerry Tirrell
Vice President, ZTTK SON-Shine Foundation
Closing Remarks
Thank You
Our Sponsors & Partners
The 2025 conference would not have been possible without the generous support of our sponsors and partners. Their commitment to the ZTTK community helps drive research and bring families together.
Conference Materials
Documents & Resources
Download the agenda, session notes, and impact report from our 2025 conference.
Conference Agenda
PDFFull schedule for both Science Day and Family Day.
View / Download →
Day 1 Summary Notes
PDFSummary of Science Day presentations and key takeaways.
View / Download →
Day 2 Summary Notes
PDFSummary of Family Day sessions and community discussions.
View / Download →
Conference Impact Report
ReportOutcomes, highlights, and impact data from the 2025 conference.
View / Download →
Video recordings from the 2025 conference will be added here once available.
The Community Grew
Then We Returned to Boston in 2026
Building on the success of this inaugural event, the ZTTK community gathered again July 17–19, 2026 — with an expanded, three-day program.
See the 2026 Conference Recap →