Foundation created by parents of Chicora girl gets bell-ringing opportunity at NYSE
When Tara Hackwelder helped start the ZTTK SON-Shine Foundation, it consisted of a handful of parents leaning on each other after their children were diagnosed with an ultrarare genetic disorder.
On Friday, Aug. 29, the foundation, which now helps families across the world, will have a rare, unique opportunity that even many large companies don’t get — ringing the bell at the New York Stock Exchange.
“Most of the people invited to do this are Fortune 500 companies, dignitaries, politicians, people of celebrity status,” Hackwelder said. “It will be great for that awareness to be brought to the foundation.”
Hackwelder, who lives in Chicora, helped create the foundation after her daughter Elizabeth, was diagnosed with Zhu-Tokita-Takenouchi-Kim syndrome, caused by a medical mutation of the SON gene.
At the time, Elizabeth was one of only five people in the world known to have ZTTK.
“When Elizabeth was diagnosed, she was one of the first people diagnosed in the world. We saw different departments at Children’s, we knew she had a lot of developmental issues, but the clinicians had trouble,” Hackwelder said. “She did genetic testing and we got a call that she had a mutation that was identified has a brand new syndrome. We were asked about letting the details be featured in a research article. You never wanna hear is something very rare, but any answer helps.”
Following Elizabeth’s diagnosis, Hackwelder created a support group with several families who also had children diagnosed with ZTTK. Over time, as more cases were discovered, the group turned into aims to connect patients diagnosed with the disease to one another, and also advocate for research of the SON gene to potentially find a cure.
Elizabeth died from the effects of ZTTK in August 2021 at the age of 8.
“The medical complexities, especially when it’s your child, it can be very isolating,” Hackwelder said. “It becomes increasingly isolating when its something so rare, like what Elizabeth had. One of the reasons we started the informal parents group, my husband and I didn’t want anyone to every feel alone while navigating this.”
One of the foundation’s board members submitted an application to be considered for ringing the bell a couple years ago, and recently found out it was awarded the opportunity.
Hackwelder is happy with the timing — September is ZTTK awareness month.
“The timing of this event is especially meaningful: It serves as the official kickoff to ZTTK Awareness Month in September. Through the NYSE bell ringing, we hope to shine a national — and global — spotlight on this rare disease, amplify the voices of our resilient community, and inspire greater investment in science, equity, and hope,” a news release from the ZTTK SON-Shine Foundation said.
The bell ringing comes after the foundation just had its first conference in Boston this past month. Hackwelder said the conference featured clinicians and researchers from across the globe, families form different countries, and people got to hear family stories that left a personal impact.
Hackwelder hopes the foundation uses the bell ringing to promote its mission and raise awareness of the disease.
“It’s a labor of love,” Hackwelder said. All the board members are parents who are not only active care givers but active advocates for kids with the syndrome, on top of their busy lives. It’s a great way to honer Elizabeth’s memory, a lot of people who haven’t met her recognize her because she was a driving force in the start and beginnings of this. We do this because people want their voices to be heard.”
The foundation ringing the bell will be on CNBC at 9:30 a.m. Friday morning.
