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ABOUT HUWE1.ORG has been created by the parents of a little boy with a HUWE1 variant. Our son, Lucas, was diagnosed in 2015 and we have found there is still little information available to families. supports the US based 501c3 nonprofit charitable organization, Louie's Huwe (EIN: 86-19300096).


We have put together this site as a starting point for basic information and to share experiences of HUWE1 gene variants. We will also share latest research publications.

This site will not provide medical or therapeutic guidance and the stories provided here are purely for information.



Ursula and Alex Green are parents to Freddy, Lucas and Suzie. Lucas has a HUWE1 gene mutation, diagnosed when he was 4 years old. Ursula is a User Experience Researcher and has a PhD in Human Computer Interaction. Alex is a Financial Software Developer and has a PhD in Physics. They live in Wiltshire in the United Kingdom.

With thanks to...

We would like to thank Dr Karen Low for her support in reviewing information on this website. Karen is a Consultant Clinical Geneticist at University Hospitals Bristol, UK.

We would also like to thank the HUWE1 families who have contributed and shared their stories on this website.



We would love to hear from you! Get in touch below or see our Facebook page and join our active private Facebook group for families and individuals affected by HUWE1 gene variants.

Alternatively just drop us an email at

Note these are personal communications, we will never add you to mailing lists or share your details.

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