2026 Global Conference
2026 ZTTK Global Community Conference
Three days of science, family connection, and community in Cambridge. Thank you to everyone who joined us — in person and virtually.
2026 Global Conference · Recap
Highlights from Cambridge
Session recordings and the full photo gallery from July 17–19 are on the way — our team is editing and uploading media now. Check back soon, or explore what happened below.
Friday — Science Day Recap
Research presentations and the clinical trial readiness panel.
Saturday — Keynote & Family Panel
Dr. Wendy Chung's keynote and the family panel discussion.
Family Day Highlights Reel
A short recap of both Family Days — sessions, socials, and the group photo.
Conference Photo Gallery
Photos from all three days in Cambridge.
By the Numbers
Conference Highlights
3
Days
Science Day + two Family Days
13
Speakers
Researchers, clinicians, and advocates
13
Sponsors
Corporate and community partners
33
Sessions
Talks, panels, and workshops
About the Conference
The 2026 ZTTK Global Conference brought together families, researchers, clinicians, and advocates in Cambridge, Massachusetts for three days of science, connection, and community — July 17–19, 2026, at the Boston Marriott Cambridge.
Building on our inaugural 2025 conference, the 2026 gathering expanded the programme with a full Science Day, two Family Days, a dedicated research panel, and sessions covering clinical care, caregiver wellbeing, and the road ahead for ZTTK research.
Venue
Boston Marriott Cambridge, 50 Broadway, Cambridge, MA 02142.
What We Offered
Free childcare throughout the conference — the SON-Shine Room for infants and toddlers (run by Corporate Kids Events, Inc.) and a Sibling Program for children age 5 and up.
A livestream option for families and researchers who could not travel to Boston.
On-site biosample collection for families who wished to contribute to ZTTK research.
Travel stipends for qualifying families, and donations made at registration that went directly to family travel assistance. Both of these programs return for every ZTTK Global Conference — see below.
Thank you to everyone who joined us in Cambridge, in person and virtually. — Ada Lio, Executive Director, ZTTK SON-Shine Foundation
What Happened
Full Schedule
Friday, July 17 — Science Day
1:00 – 1:15 PM
Opening Remarks: ZTTK SON-Shine Foundation Research Efforts
TalkMara Cowen, PhD, Scientific Director, ZTTK SON-Shine Foundation
1:15 – 2:00 PM
The Family Experience: Stories from the ZTTK Community
PanelZTTK parents
2:00 – 3:00 PM
Science Presentation: ZTTK Research Updates
TalkErin Ahn, PhD, University of Alabama at Birmingham; Bokai Zhu, PhD, University of Pittsburgh
With time for questions.
3:00 – 3:15 PM
Break
Break3:15 – 4:00 PM
Clinical Trial Readiness: Building on a ZTTK Disease Concept Model
TalkPat Koochaki, Senior Principal, ICON
4:00 – 4:45 PM
New Frontiers: Exploring Gene Editing for ZTTK
TalkMorgan Robinson, PhD, Purdue University
4:45 – 5:00 PM
Closing Comments
TalkMara Cowen, PhD, Scientific Director, ZTTK SON-Shine Foundation
4:00 – 6:00 PM
Family Registration Open
Optional5:00 – 6:00 PM
Scientific Happy Hour at Hotel
Optional6:00 PM
Family / CAB / SAB / Researcher Social Time — Eastern Food Hall
OptionalOptional evening social.
Saturday, July 18 — Family Day One
8:00 – 9:00 AM
Breakfast
Break9:00 – 9:15 AM
Opening Remarks
TalkAda Lio, Executive Director, ZTTK SON-Shine Foundation
9:15 – 10:00 AM
Keynote: From Diagnosis to Treatment: Building Pathways for Rare Neurodevelopmental Conditions
TalkWendy Chung, MD, PhD, Chief of Pediatrics, Boston Children's Hospital
10:00 – 10:45 AM
ZTTK Science 101: Understanding the Basics, Building Toward Treatments
TalkErin Ahn, PhD, Lead Researcher, ZTTK SON-Shine Foundation
10:45 – 11:00 AM
Break
Break11:00 – 11:45 AM
ZTTK Research Update: Progress, Priorities, and What Comes Next
TalkMara Cowen, PhD, Scientific Director, ZTTK SON-Shine Foundation
11:45 AM – 12:30 PM
The Power of Patient Communities in Rare Disease Therapy Development
TalkWendy Erler, SVP Patient Affairs, Sarepta
12:30 – 1:30 PM
Lunch
Break1:30 – 2:15 PM
Turning Family Data into Research Insights
TalkElli Brimble, MSc, MS, GCG, Clinical Strategy, Citizen Health
2:15 – 3:15 PM
Drug Repurposing for ZTTK: Results, Questions, and Next Steps
TalkRachel Heilman, PharmD, BCPS, The Rory Belle Foundation
3:15 – 4:00 PM
Defining ZTTK: A Shared Disease Concept Model
TalkPat Koochaki, Senior Principal, ICON
4:00 PM
Group Photo
Break6:00 – 8:00 PM
Reception and Dinner
Break9:00 AM – 5:00 PM
SON-Shine Program & Sibling Program
OptionalFree childcare, available during both Family Days. SON-Shine Room for infants and toddlers; Sibling Program for ages 5+.
9:30 AM – 4:00 PM
Bio Sample Collection Opportunity
OptionalFamily Day One only. Sign-up required.
All day
Genetics Q&A + Citizen Health Booth
OptionalGenetics Q&A sign-up sheet at registration. Visit the Citizen Health booth to learn how to participate in ZTTK research.
Sunday, July 19 — Family Day Two
8:00 – 9:00 AM
Breakfast
Break9:00 – 9:15 AM
Opening Remarks
TalkShannon Boyle, Chair of the Board, ZTTK SON-Shine Foundation
9:15 – 9:45 AM
Supporting Families: Connecting, Learning, and Navigating ZTTK
TalkDan Bachman, Technology Director & Heather Chesser, Communications Director, ZTTK SON-Shine Foundation
9:45 – 10:45 AM
Breakout Discussions: Care Across Medical Specialties
WorkshopLed by Heather Chesser
10:45 – 11:00 AM
Break
Break11:00 AM – 12:00 PM
Breakout Discussions: Supporting Every Age and Stage
WorkshopLed by Heather Chesser
Afternoon
Red Sox Game
OptionalOptional afternoon outing. Pre-sign-up required.
Speakers
Mara Cowen, PhD
Scientific Director
ZTTK SON-Shine Foundation
Erin Ahn, PhD
Lead ZTTK Researcher
University of Alabama at Birmingham
Dr. Ahn is a Professor in the Department of Pathology (Division of Molecular and Cellular Pathology) at the University of Alabama at Birmingham, and the Foundation's primary researcher for ZTTK syndrome. She has studied the SON gene since 2005 and leads collaborative research aimed at understanding and ultimately treating the condition.
Bokai Zhu, PhD
University of Pittsburgh
Pat Koochaki
Senior Principal
ICON
Morgan Robinson, PhD
Purdue University
Ada Lio
Executive Director
ZTTK SON-Shine Foundation
As a Board Member of the ZTTK SON-Shine Foundation, Ada is committed to accelerating drug development for her son Lucas and others with ZTTK. Currently serving as the Director of Strategy at CVS Health, she is dedicated to driving accessibility and affordability in healthcare products and services.
Wendy Chung, MD, PhD
Chief of Pediatrics
Boston Children's Hospital
Wendy Erler
SVP Patient Affairs
Sarepta
Elli Brimble, MSc, MS, GCG
Clinical Strategy
Citizen Health
Rachel Heilman, PharmD, BCPS
The Rory Belle Foundation
Shannon Boyle
Chair of the Board
ZTTK SON-Shine Foundation
Shannon Boyle lives near Philadelphia, Pennsylvania with her husband and their 4 children, including their SON-Shine, Audra. Shannon is a founding member of the ZTTK SON-Shine Foundation and was re-elected President in 2026. She has been a Registered Nurse in the Pediatric Intensive Care Unit at Children’s Hospital of Philadelphia since 1999.
Dan Bachman
Technology Director
ZTTK SON-Shine Foundation
Heather Chesser
Communications Director
ZTTK SON-Shine Foundation
Sponsors
platinum sponsors
Ultragenyxgold sponsors
Hershey
Ion Banksilver sponsors
Kendra Scott
New York Giants
Philadelphia Flyers
USQ (Union Square)
Citizen Health
NAPA
ICON plc
CVS Health
Ark Therapeutics
EBI SushiEvery ZTTK Conference
Conference Programs
These two programs run at every ZTTK Global Conference. They aren't open right now — the 2026 conference has concluded — but they'll return when registration opens for the next one.
Registration
Registration opens ahead of each ZTTK Global Conference. Donations made at registration go directly to family travel assistance for that year.
Travel Stipend
Qualifying families can apply for a travel stipend to help offset the cost of attending. Applications open with registration; notifications are sent in the weeks before the conference.
Our First Conference
See How This Community Started
The 2026 conference built on our inaugural 2025 gathering — 180+ attendees and the first time the global ZTTK community met in person.
See the 2025 Conference Recap →