MEET THE TEAM

Newly appointed in 2024, Sydney is the mother of River​ and lives with her family in Stillwater, Oklahoma. She has a professional background in accounting and holds a Bachelor’s Degree in Accounting from Oklahoma State University. She has been an integral part of our fundraising efforts by leading charity events including the annual River Run, benefit concerts and Louie's HUWE shirt sales.

Elizabeth is mother to Louie and a committed supporter of the HUWE1 community. She has initiated, built and grown Louie’s Huwe, the first and only non-profit dedicated to supporting people with HUWE1-related genetic conditions. She has driven our first funded research project at Seattle Children's research institute and has been integral to all our fundraising including our inaugural Gala. Elizabeth lives with her family in Virginia, USA.

Kristin Whitford Baranano, M.D., Ph.D. is Assistant Professor in the Department of Neurology at Johns Hopkins University School of Medicine in Baltimore, USA. She is a pediatric neurologist and neurogeneticist who specializes in the diagnosis and management of rare neurologic disorders with a genetic basis.

Brock Grill, Ph.D. is a professor and principal investigator actively researching HUWE1. His work focuses on understanding how information is
relayed within nerve cells to regulate cellular activities and animal behavior. He has been studying HUWE1’s role in the nervous system for the past ten years. He is a professor at the University of Washington Medical School and at
the Seattle Children’s Research Institute, USA.

Ursula is mother to Lucas and lives in Wiltshire, in the United Kingdom. She was one of the founding members of the HUWE1 Facebook Group and looks after the website HUWE1.org. She works in User Experience Design for financial services organisations in Edinburgh and has a Ph.D in Computer Science.