Chicora Resident Chosen to Participate in Ringing The Opening Bell of the New York Stock Exchange

Tara Hackwelder, left, is holding a photo of her daughter, founder of the ZTTK SON-Shine Foundation, was part of the opening bell ceremony at the New York Stock Exchange on Friday, Aug. 29, 2025. She is also pictured above with her peers and families with their children affected by ZTTK Syndrome.

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By Brad Rapp

Tara Hackwelder a local Butler County resident and founder of the ZTTK SON-Shine Foundation had the honor of ringing the opening bell at the New York Stock Exchange this past Friday on August 29th.

The event served as the official kickoff to ZTTK Syndrome Awareness Month in September with the hopes of shining a national and global spotlight on this rare disease.

ZTTK syndrome, or Zhu-Tokita-Takenouchi-Kim syndrome, is a rare, severe, multi-system developmental disorder caused by a pathogenic variant in the SON gene, resulting in global developmental delays, intellectual disability, seizures, and abnormalities in various organs like the brain, heart, and muscles.

Hackwelder’s daughter Elizabeth, who passed away in 2021 from ZTTK Syndrome was diagnosed in 2015. She was one of the first five cases identified in the world. To date, there are only three hundred documented cases.

Hackwelder was chosen among her peers for creating and establishing the ZTTK SON-Shine Foundation. Hackwelder was an early advocate for research and funding when little was known about this rare disease. The foundations roots started out as a group on a FaceBook page among parents. Hackwelder’s efforts included meeting with doctors and researchers and working with the National Institute of Health to secure funding and include kids with ZTTK Syndrome.

In 2018-2019 the ZTTK SON-Shine Foundation established itself as a 501(c)3 organization. The foundation now includes board members from all over the world.

In fact, it has become a mission for the Hackwelder family to share Elizabeth’s story and bring to light ZTTK Syndrome which took the life of their daughter, Elizabeth in 2021.

“We learned to fight for and advocate for whatever she needed, no matter how steep or difficult the task, because we wanted the very best for her. We are here today in memory of Elizabeth and will continue to fight for all the kids affected with this rare disease. She is the reason ZTTK Syndrome will be better understood and kids cared for in the future,” stated Hackwelder.

The foundation raises funds to accelerate research and improve the lives of those living with ZTTK by providing patient resources and care recommendations.

The Hackwelder’s want all ZTTK families to know that they are not alone. “ We believe that the blessings outweighed the burdens, and that Elizabeth showed us that the little things are the big things and that every day is a gift.”

Joining Tara on the platform at the New York Stock Exchange were the current President and Vice-President of the ZTTK Foundation, Shannon Boyle and Kerry Tirrell along with their families. The two did not hesitate to include Hackwelder who was so instrumental in the early stages of the ZTTK Foundation.

Hackwelder resigned in the fall of 2023 as President of the ZTTK SON-Shine Foundation but stays involved as a consultant.

The ZTTK SON-Shine Foundation is committed to improving the lives of individuals with ZTTK by accelerating research to develop accessible and effective treatments and ultimately, a cure. We focus on funding cutting-edge science, building strong support systems for the global ZTTK community, and raising awareness about ZTTK syndrome.