We are speaking with Hannah Arn from ZTTK SON-Shine Foundation. The ZTTK SON-Shine Foundation is a non-profit dedicated to fundraising for awareness and research into ZTTK. ZTTK is a rare neurodevelopmental disease caused by changes to the gene SON, which is critical for many bodily functions. This disease can manifest in different ways, as seen in Arn’s daughter, who was diagnosed at a young age after developmental delays that prompted genetic testing. Some of the more prominent symptoms among children with ZTTK include eye-crossing, low muscle tone and immobility, and non-verbal expression common to those with autism. Today, there are less than 500 diagnosed cases of ZTTK worldwide, so Arn and her family were at a loss for information. By starting the ZTTK SON-Shine Foundation, Arn and her family have formed their own community and worked to spread more information about this condition.
Hannah Arn does not know any affected families in Nashville, but she has traveled around the world to meet some of the few families with children with ZTTK. She is optimistic that there is more research forthcoming about ZTTK that will shed more light on the disease’s causes and potential treatments. ZTTK on their website welcomes donations to fund more research into the disease, and on September 23rd a concert, Songs for SONshine, will be hosted at the Analog at the Hutton Hotel for ZTTK Awareness Month to raise funds. Tickets are available now.