Cover Story
Sophia and Olivia
Sophia, 6, and her big sister Olivia, 10, are two joyful sisters from New York City whose family roots stretch from France and Russia to the Democratic Republic of Congo and Angola. Sophia is a book lover, a dancer, and a budding pianist who is happiest anywhere near a pool. She has Kleefstra syndrome, and every new word, step, and milestone is hard-won. She meets each one with a determination that lights up her family, teachers, and everyone lucky enough to know her.
Olivia is a passionate chess player who dreams of becoming a chess coach one day; at home, everyone already calls her “Coach Olivia” and she counts the legendary Judit Polgár among her heroes. She is also Sophia’s biggest champion, encouraging her sister every step of the way. The two share a bond built on love, laughter, and adventure. Through IDefine and the Kleefstra syndrome community, their family hopes to help build a world with greater understanding and inclusion, one that sees the unique strengths in every individual.
Founded in 2020 by a group of parents seeking better answers for their children following a Kleefstra syndrome (KS) diagnosis, IDefine is a nonprofit organization dedicated to providing a central community for families affected by the condition.
Photo by Rick Guidotti of Positive Exposure
The organization connects families, researchers, clinicians, and industry partners to accelerate research, advance the development of potential treatments, and ensure families have access to trusted resources and support.
Kleefstra syndrome is a rare genetic condition characterized by developmental delay, intellectual disability, and low muscle tone. It is caused by a change or deletion in the EHMT1 gene on chromosome 9.
In July 2026, several families from the IDefine community gathered at the Positive Exposure Gallery to participate in a portrait session celebrating the beauty, individuality, and lived experiences of people with KS. These images will be presented during the 2026 Kleefstra Syndrome Family Conference and Scientific Summit in Waltham, Massachusetts, in August 2026.