Jacqueline’s Fight with SHINE Syndrome

Hi. We are Ulyana and Albert Kats. Our 5 year-old daughter Jacqueline is suffering from incredibly rare disease DLG4 synaptopathy known as SHINE syndrome. This neurodevelopmental disorder which is characterized by sleep disturbances, low muscle tone, intellectual disability, neurological disorders, epilepsy.

Imagine watching your child grow, laugh, and explore the world, only to discover that they face an uncertain future due to a condition so rare that it lacks treatment at this time. This is the reality our family is living as we navigate life with our beloved daughter Jacqueline.

We have partnered with Rami Aqeilan, PhD, Professor for Medical Research in the Field of Genetic Engineering Institute, Faculty of Medicine, Hebrew University of Jerusalem to continue his groundbreaking research into Shine Syndrome. Your donation will go directly toward funding genetic and clinical research to find a cure for our daughter and other kids around the world.

Jacqueline loves to sing and dance. She's curious about the world and inspires us every day. With your help, we can ensure she has the brightest possible future.

Together, we can shine a light on Shine Syndrome and create a brighter tomorrow.

Thank you from the bottom of our hearts for your support.