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Louies Huwe Retreat 2022 HUWE1 families


A nonprofit supporting research into HUWE1-related genetic conditions

LOUIES HUWE Louie at the window logo


Louie is a little boy with a HUWE1-related genetic condition. In 2021, Louie's parents established a 501c3 nonprofit charitable organization in the United States - Louie's Huwe (EIN: 86-1930096)With a fantastic team including medical and genetic experts, Louie's Huwe is growing and is supporting this.

The core purpose of Louie's Huwe is to drive medical research into HUWE1-related genetic conditions and to develop treatments for issues faced by Louie and other children and adults like him around the world.

Through science and medical advancements, Louie's Huwe aims to better lives with discoveries that will help children and adults living with these conditions as well as future babies that are diagnosed.

Want to help out?

  • Help build our community - follow @louies_huwe on Instagram.

  • Donate with PayPal below. All donations are gratefully received and will help fund medical research and change lives.

  • Sponsor our inaugural fundraising GALA - the Louie's HUWE 1 in a Million Gala - to take place in January 2024!

Louies Huwe Retreat 2022 HUWE1 families 2


Louie's Huwe Board is a small team of dedicated volunteers comprising medical and genetic experts as well as financial, legal and fundraising professionals. All positions are unsalaried and entirely voluntary - we are hugely grateful for their time and support. Brief profiles of our President and Scientific Advisers are shown below.

Elizabeth Coulter, Louie's Huwe Board President

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. Elizabeth lives with her family in Virginia, USA.

Dr. Kristin W. Baranano, Scientific Adviser

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. Read more about Dr. Baranano at Johns Hopkins.

Dr. Brock Grill, Scientific Adviser

Brock Grill, Ph.D. is a professor and research scientist actively researching HUWE1. As a geneticist and biochemist who studies nervous system development, his work focuses on understanding how information is relayed within nerve cells to regulate cellular activities and cell composition. 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. More information about Dr. Grill and his research program can be found here:

1) Profile at Seattle Children’s Research Institute

2) Profile at University of Washington Medical School, Department of Pediatrics

3) For a deep dive on science, please see the Grill Lab website 

Featured pictures on this page show Louie and other HUWE1 families enjoying the Louie's Huwe Retreat 2022 held in Virginia, USA.

For more information about Louie's Huwe, please email us.

Louies HUWE Donate QR Code


Please do get in touch - we would love to hear from people who want to find out more about volunteering opportunities or ways to further our community. Email Louie's Huwe for further information or for the latest information and updates follow @louies_huwe on Instagram or Facebook.

Learn more about our financial status:

If you'd like to make a donation, please do so below. All donations, no matter how small, are gratefully received and will help fund research into HUWE1.

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