Kristie DeMarco

Kristie DeMarco is the president and founder of Global DARE Foundation and a ULF Board member. For the last 22 years, she has worked at TD Bank in a variety of leadership roles. In 2019, Kristie was diagnosed with Refsum disease. She quickly discovered that no patient advocacy group existed and that no research was being done to find better therapies. This led her to establish Global DARE Foundation.

DARE's mission is to improve the lives of people with Refsum disease. In 18 short months, DARE established a Medical and Scientific Advisory Board, rolled out the first ever patient registry for Refsum disease, ran a series of educational webinars, developed a Country Ambassador program to raise awareness around the world, funded their first research project and worked with a research team to bring the Refsum mouse model to Johns Hopkins to start initial studies in gene therapy.