John Wilkins, born in 1982, lives with Barth syndrome, a condition that didn't have a name until he was 11 years old. It wasn't until he reached the age of 16 that he and his family discovered another person with the disorder. Throughout his journey, John's grandparents, Paula and Woody Varner, stood as unwavering pillars of support. From the moment of his birth, they tirelessly sought healthcare options to aid him.
John reflects, "In many ways, the Barth Syndrome Foundation embodies my grandparents' dreams. My grandfather was proactive and a problem solver, dedicated to uncovering answers for Barth syndrome."
Woody passed away eight months prior to the inaugural meeting of Barth families in 2000. However, Paula, in his memory, contributed to funding the gathering in Baltimore and emerged as a visionary advocate for the Barth Syndrome Foundation. Her unwavering belief in the potential and her ability to inspire hope became lifelines for founding families.
Paula and Woody played pivotal roles in nurturing the Barth Syndrome Foundation during its infancy. In recognition of their legacy, The Barth Syndrome Foundation Varner Award for Pioneer in Science and Medicine (“The Varner Award”) was established in 2007. This prestigious award publicly acknowledges individuals who have significantly advanced scientific and medical knowledge, thereby enhancing our understanding and treatment of Barth syndrome.
Though Paula passed away in 2007, donations made in the Varners’ memory have fueled numerous science and medicine initiatives critical to the Barth Syndrome Foundation’s mission. These initiatives offer individuals like their grandson, John, a pathway to a better and healthier life.
