Members of the ZTTK SON-Shine Foundation traveled to New York City to ring the opening bell for the New York Stock Exchange on Friday, Aug. 29. Tara Hackwelder, who lives in Chicora, helped create the foundation that brings awareness to the rare disease. Submitted photo

Tara Hackwelder, who lives in Chicora, helped create the ZTTK SON-Shine Foundation after her daughter, Elizabeth, was one of the first people in the world diagnosed with the rare genetic disorder. Elizabeth died in 2021.

The foundation promotes awareness of the rare disease and offers support for families and their children who have ZTTK. The foundation has grown to include families from across the world.

On Friday, Aug. 29, the foundation got to ring the opening bell at the New York Stock Exchange. September is ZTTK Awareness Month and Hackwelder said she hoped to use the bell ringing to promote the foundation’s mission and raise further awareness.

Tara Hackwelder, who lives in Chicora, helped create the ZTTK SON-Shine Foundation after her daughter, Elizabeth, was one of the first people in the world diagnosed with the genetic disorder. Submitted photo

Members of the ZTTK SON-Shine Foundation traveled to New York City to ring the opening bell for the New York Stock Exchange on Friday, Aug. 29. Tara Hackwelder, who lives in Chicora, helped create the foundation that brings awareness to the rare disease. Submitted photo

Members of the ZTTK SON-Shine Foundation traveled to New York City to ring the opening bell for the New York Stock Exchange on Friday, Aug. 29. Tara Hackwelder, who lives in Chicora, helped create the foundation that brings awareness to the rare disease. Submitted photo