About Us

Menkes Foundation  UK was founded in 2009 shortly after the diagnosis of a family member, our amazing, brave and beautiful Ollie. Having been directly affected by this rare metabolic disorder we wanted to find a way to raise awareness of Menkes Syndrome. Through our experience with Ollie, we have an understanding of the needs and challenges faced by families that have a child with a life-limiting illness. All of the work that we do for Menkes Foundation UK is on a voluntary basis which we do alongside our day job and family life.

Our main objectives are to offer help, advice and support to families in the UK. Fundraising is also a major part of what we do the money we raise contributes to being able to support families and to aid ongoing advances in research. Events and activities also provide a platform to help educate on symptoms and awareness. Our fundraising page enables you to see some of the events that have taken place over the years. We would love for you to get involved as so many other families and their friends have done so already!

This website has been designed to answer just some of the questions you may have relating to Menkes Syndrome it’s symptoms and it’s treatment, as well as providing information on our up and coming events and how you can help us.

We hope you find our site useful and that we are able to answer all of your questions and concerns. If however you need more information, please feel free to contact us using our online form.