LOUIE'S HUWE: A 501C3 NONPROFIT DEDICATED TO HUWE1 RESEARCH
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 HUWE1.org is supporting this.
The core purpose of Louie's Huwe is to drive 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 research and change lives.
Sponsor our inaugural fundraising GALA - the Louie's HUWE 1 in a Million Gala - to take place in January 2024!
ABOUT OUR TEAM
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 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. More information about Dr. Grill and his research program can be found here:
3) For a deep dive on science, please see the Grill Lab website
WHY IS RESEARCH INTO HUWE1 IMPORTANT?
People affected by HUWE1-related genetic conditions vary in the symptoms they experience. However, because these conditions are extremely rare, families can be left with uncertainty around diagnosis, outlook, treatments and how to get the best support. Through research we aim to:
Improve recognition of HUWE1 as a diagnosis and the symptoms.
Build knowledge of HUWE1 gene function to better understand the genetic basis of this disorder.
Identify treatments for the most pressing symptoms, particularly epilepsy.
Improve lives with information and guidance.
WHAT RESEARCH DOES LOUIE’S HUWE SUPPORT?
Key areas of research into HUWE1 that we currently support include…
Laboratory research at Seattle Children’s Research Institute with Brock Grill, Ph.D. - for more details see below.
The HUWE1 Data Collection Program, powered by RARE-X. This includes patient reported surveys, collating symptoms and providing anonymised access for researchers around the world. Patients can take part at: https://huwe1.rare-x.org/
HUWE1 research at Seattle Children’s Research Institute supported by Louie's Huwe
Who is carrying out the research?
Brock Grill, Ph.D. is a professor and principal investigator actively researching HUWE1 and a Louie’s Huwe Board Member. 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.
What does the research involve?
As a laboratory based program, this research aims to use CRISPR gene editing to understand how human genetic variants in the HUWE1 affect gene function in the C. elegans nematode. Future stages of research are poised to include lab-based drug screening to identify existing FDA approved drugs that improve outcomes in humanized C. elegans models of HUWE1-related neurodevelopmental disorder. This has the potential to open up new therapies for kids.
What are the benefits?
This research will increase our understanding of how human variants in HUWE1 affect gene function, and test whether individual human variants in HUWE1 are pathogenic supporting causative diagnosis for individual patients. Through future efforts screening FDA approved drugs, we aim to develop potential treatments and rapidly speed clinical applications by repurposing existing safe drugs for treatment of HUWE1-related neurodevelopmental disorder.
Through research we aim to further understanding of HUWE1. Our international HUWE1 community and voluntary board is what makes this possible - thank you for your support.
WANT TO FIND OUT MORE ABOUT LOUIE'S HUWE?
To find out more about Louie’s Huwe download our information brochure or please do get in touch - we would love to hear from people who want to get involved or 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:
Our EIN: 86-1930096.
Download our 2021 Form 990
View our GuideStar profile here: Louie's Huwe Guidestar Profile
If you'd like to make a donation, please do so via PayPal below. Or to help us avoid processing fees, please send a check to 'Louie's Huwe' at 508 Crabapple Drive, Stafford, VA 22554.
All donations, no matter how small, are gratefully received and will help fund research into HUWE1.
Featured pictures on this page show Louie and other HUWE1 families enjoying the Louie's Huwe Retreat 2022 held in Virginia, USA. 💚