The Bow Foundation

The Bow Foundation is dedicated to supporting GNAO1 families, research and awareness.

The Foundation was launched in 2017 by parents of children with GNAO1 disorders. Headquartered in the United States, the Foundation is recognized by the IRS as a nonprofit charitable organization. The vision is to build a better tomorrow for GNAO1 patients and their families by fundraising to support medical research that leads to a more informed GNAO1 body of knowledge, better patient treatment options and an eventual cure.

Stichting GNAO1 NL

The Dutch Foundation for GNAO1 affected children, trading under the name Stichting GNAO1 NL, was founded by Max’s family and friends. Max was 4 years old when the foundation was founded and he has a mutation on the GNAO1’s gene. When Max was diagnosed, he was said to be the first in the Netherlands. It is not known whether this was actually true, but there are now around 10 children in the Netherlands who have been diagnosed with the genetic mutation GNAO1.

The main objective of the GNAO1 NL Foundation is to promote and support research on mutations in the GNAO1 protein and to promote and organize informational and educational activities related to GNAO1.

GNAO1 Spain

GNAO1 Spain is a non-profit association that was born from the meeting of 12 Spanish families whose children have a pathogenic mutation in the GNAO1 gene. They are families that decisively face a serious diagnosis and fight for a better future for their children and for all those who are yet to be diagnosed and yet to come.

They are the fourth organization in the world focused on the research of mutations in GNAO1, following the path started by the American (Bow Foundation), Dutch (Stichting GNAO1) and Italian (Famiglie GNAO1) associations.

Mondo GNAO1 UK

Zakk was diagnosed with GNAO1 at the age of 10yrs old with no access to information or support. This has spurred his family to create the first UK charity. The charity is founded using Zakk’s nickname, ‘Mondo’

Our amazing team of part-time volunteers are committed to raising the profile of GNAO1 -a rare genetic disorder, whilst raising funds to support further research in to the condition. Think you could help? Get in touch for more information! Our mission is to fundraise to help support research into treament, to make life easier and provide a better quality of life for GNAO1 patients. By promoting the existence of the disorder, we hope to raise awareness for those who may be living undiagnosed.

GNAO1 Tuki ry

GNAO1 Tuki ry. promotes research and supports the quality of life of Finnish GNAO1 patients and families.
One of the association’s primary goals is to gather information about the GNAO1 gene defect and its possible treatments. As this genetic defect is rare, little information is available in Finland. In order to obtain information, they cooperate with the parents of GNAO1 children around the world and participate in international GNAO1’s conferences.

The members of the association hope to find ways to make life easier for GNAO1 children and their families. The main goal is to find a correction for this genetic defect and to improve the quality of life of GNAO1 patients.