ZTTK SON-Shine Foundation Rings NYSE Opening Bell, Kicking Off Awareness Month

NEW YORK – The ZTTK SON-Shine Foundation, a non-profit dedicated to Zhu-Tokita-Takenouchi-Kim (ZTTK) Syndrome, rang the New York Stock Exchange (NYSE) Opening Bell today, marking the official commencement of ZTTK Awareness Month in September. The event aims to elevate global awareness and garner increased support for families impacted by this ultra-rare genetic disorder.

The NYSE announced the event on social media, stating, > "The NYSE welcomes the ZTTK SON-Shine Foundation to kick off ZTTK Awareness Month in September to raise awareness and support for families affected by ZTTK Syndrome. 🧡" This significant platform provides a rare opportunity for the foundation, typically reserved for Fortune 500 companies and dignitaries, to spotlight ZTTK Syndrome on a national and international stage.

ZTTK Syndrome is a severe, multisystem neurodevelopmental disorder caused by mutations in the SON gene. First identified in 2015-2016, it affects various bodily systems, including neurological, musculoskeletal, and organ development. Common symptoms include developmental delays, intellectual disability, seizures, and feeding difficulties, with currently no known cure or specific treatments.

The ZTTK SON-Shine Foundation was established by parents of affected children, including Tara Hackwelder, whose daughter Elizabeth, one of the first diagnosed, passed away from the syndrome in 2021. What began as an informal support group has evolved into a formal non-profit committed to accelerating research, fostering community support, and advocating for those living with ZTTK Syndrome. The foundation has identified over 250 affected individuals globally, significantly more than the approximately 60 cases documented in medical literature.

Shannon Bole, Chair and President of the ZTTK SON-Shine Foundation, emphasized the importance of the bell ringing, stating in a recent interview, "It's extremely important for small foundations and communities like ours to spread the word of who we are and what we need. There's nobody else besides us that's going to be advocating for ourselves." The foundation recently hosted its inaugural global conference, bringing together families, clinicians, and researchers to advance understanding and treatment pathways.

The organization is actively pursuing cutting-edge research, including patient registries, stem cell and mouse models, and drug repurposing studies, with the ambitious goal of developing effective treatments within the next five years. This high-profile event at the NYSE is expected to significantly boost fundraising efforts and attract further investment in scientific research for ZTTK Syndrome.