Ashley Point

Ashley Point grew up in Marietta, Georgia and graduated from the University of Kentucky in 1999.  After college she moved to Washington, DC to work in national political fundraising.  She continued her work in Texas and North Carolina for over 10 years, before attending the Joan C. Edwards School of Medicine at Marshall University, where she met her husband, Dana.  After two years, she left medical school to stay home with their three children-Jackson (born 2012), Davis (2014) and Alex Cate (2017).  Ashley became interested in the KdVS Foundation after her son, Davis, was diagnosed with Koolen-de Vries Syndrome at 18 months old.  Ashley and her family currently reside in Wilmington, North Carolina.

Ashley became President of the Koolen-de Vries Syndrome (KdVS) Foundation in September 2020.  In January 2022, Ashley and her family created the documentary, Davis Out of the Unknown.  This 12-minute documentary features our Wilmington family as we fight to find a treatment/cure for our son’s rare disease.  Our film was produced by an amazing group of diverse, young professionals.  Our film has been screened at NFFTY, Scout Film Festival, Austin Film Festival, Beyond the Short, 3 Global Genes Conference and won the Premio Speciale USR-Telethon Award at the Uno Sguardo Raro Film Festival (the European Rare Disease Film Festival).  Through the creation of the documentary, the nonprofit My Kool Brother was formed.

To find out more about KdVS, please email Ashley at ashley@mykoolbrother.org.