The IUP Department of School Psychology, Special Education, and Sociology proudly celebrates alumna Tara Hackwelder (Sociology MA ‘07), founder of the ZTTK SONshine Foundation, who joined leaders of the foundation in ringing the opening bell at the New York Stock Exchange on Friday, August 29, 2025.
Hackwelder, a Butler County resident, founded the ZTTK SONshine Foundation after her daughter, Elizabeth, was among the first five patients in the world diagnosed with ZTTK Syndrome in 2015. The Foundation is the only global nonprofit dedicated to ZTTK—a rare neurodevelopmental disorder caused by mutations in the SON gene—and today serves families across 36 countries.
The NYSE ceremony marked not only a recognition of the Foundation’s impact but also the official kickoff of ZTTK Awareness Month in September.
“We are honored and thrilled for the opportunity to ring the bell at the New York Stock Exchange—a momentous milestone for the ZTTK SONshine Foundation and the global community we serve,” said Hackwelder. “This moment represents hope, awareness, and recognition for every family navigating life with ZTTK Syndrome.”
The event followed the Foundation’s first-ever Global ZTTK Community Conference, which brought together more than 150 participants, including families traveling from as far as Australia, academic researchers, biotech innovators, healthcare professionals, and rare disease advocates. The conference signaled a powerful step forward in advancing research and pioneering new treatments for ZTTK through collaboration and innovation.
The Foundation’s achievements include launching the first ZTTK stem cell model, building international patient registries, securing transformative funding such as a grant from the Chan Zuckerberg Initiative, and forging partnerships across research and biotech communities worldwide.
Hackwelder credits her IUP education in sociology as a strong foundation for her work as a nonprofit leader and advocate.
