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ZTTK Foundation Rings the NYSE Opening Bell

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ZTTK Foundation Rings the NYSE Opening Bell

On August 29, 2025, the ZTTK SON-Shine Foundation reached a milestone moment: families and children affected by ZTTK syndrome rang the opening bell at the New York Stock Exchange. The ceremony brought unprecedented visibility to ZTTK syndrome on one of the world's most recognized stages.

Foundation President Shannon Boyle discussed the critical need for increased research funding for ultra-rare diseases, while Executive Director Ada Lio highlighted the cutting-edge science being pursued to develop treatments for ZTTK patients.

Watch the NYSE Interviews

Interview (Shannon Boyle — Chair): ZTTK SON-Shine Foundation Chair Discusses What's Needed to Boost Research Efforts

Interview (Ada Lio — Executive Director): ZTTK Executive Director Breaks Down Cutting-Edge Science Used to Treat Patients

Event Photos — August 29, 2025

Families and children affected by ZTTK syndrome celebrate with the ZTTK SON-Shine Foundation team on the podium at the New York Stock Exchange opening bell ceremony.
Foundation President Shannon Boyle being interviewed by NYSE TV on the trading floor.
Foundation President Shannon Boyle interviewed by NYSE TV.
Executive Director Ada Lio being interviewed by NYSE TV on the trading floor.
Executive Director Ada Lio interviewed by NYSE TV.
A ZTTK SON-Shine Foundation team member holds a young boy affected by ZTTK syndrome while holding the ceremonial New York Stock Exchange gavel.
An aerial view of the New York Stock Exchange trading floor during the ZTTK SON-Shine Foundation opening bell ceremony, with the Foundation’s families gathered at the podium and the ZTTK logo displayed on the floor below.
A ZTTK SON-Shine Foundation team member holds a framed photo of a child affected by ZTTK syndrome at the New York Stock Exchange opening bell ceremony.

The event underscored how far the ZTTK community has come since the syndrome was first described in 2016, and reinforced the foundation's commitment to raising awareness at every level — from research labs to the trading floor.

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Boston Globe Profiles ZTTK Foundation's Mission

The Boston Globe published a feature story highlighting the ZTTK community's efforts to accelerate understanding and treatment of this ultra-rare syndrome.

Stay in the Loop

More milestones, research updates, and community stories from the ZTTK SON-Shine Foundation.

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