My child Zakk, was diagnosed with GNAO1 at the age of 10yrs old with no access to information or support. This has spurred us on as a family, to create the first UK charity. The charity is founded using Zakk's nickname, 'Mondo'
We are not yet raising enough funds to register with the Charity Commission, but we are registered as a charity for tax purposes with HMRC.
We have set up this small charity, to help raise awareness of the disorder and to raise funds to support research. We work in partnerships with other international foundations, to spread the word and make a difference.
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.
Your support and contributions will enable us to meet our goals and improve conditions. Your generous donation will fund our mission.