Founded in 2012, Joseph’s Goal is the leading global fundraiser and the UK’s only NKH (Non-Ketotic Hyperglycinemia) charity who are driving life changing research into this ultra rare condition.
Giving hope to children living with NKH
Joseph's Goal
Every donation helps bring NKH research closer to life-changing breakthroughs.
meet joe
Joe was born with NKH (Non Ketotic Hyperglycinemia) and was given just 10 days to live.
Now 16, he has defied every expectation. His strength and determination are the reason Joseph’s Goal exists.
Created by his parents, Paul and Emma, the charity continues to fight for better treatments, more research and a brighter future for children living with NKH.
Joe continues to inspire people across Wigan and beyond, and his story has brought communities together in incredible ways.
What Is NKH?
NKH (Non Ketotic Hyperglycinemia) is an ultra rare genetic condition caused by a dangerous build up of glycine on the brain.
Only around 20 children in the UK live with NKH, and fewer than 500 worldwide.
The condition can lead to seizures, severe developmental challenges and life limiting complications. Joe is severely disabled and lives with seizures as part of his condition, and many other children with NKH face similar challenges.
There is currently no cure, but pioneering research offers real hope for better treatments and, one day, a cure.
With your help, we can continue to fund this vital research and bring hope to families affected by NKH.
Together, We’re Making a Real Impact
Since Joseph’s Goal began in 2012, your support has made extraordinary things possible. Because of the kindness of people across Wigan, the UK and beyond, we have:
fundraising
Raised over £1,200,000 to drive NKH research
Research
Helped accelerate scientific progress by 12–18 months
support
Supported families navigating this devastating diagnosis
community
Built a global community behind a condition that affects so few, yet needs so much
By standing with Joe and families like his, you’re helping drive the research that could lead to better treatments and a brighter future.
Where Your Donations Go
Funds raised by Joseph’s Goal are sent directly to Dr Nick Greene at the UCL Great Ormond Street Institute of Child Health, who leads the UK arm of NKH research.
Dr Greene and his team have already identified the defective gene that causes NKH and are now working on ways to replace it with a healthy gene through gene replacement therapy.
He has acknowledged that support from Joseph’s Goal has accelerated this research by 12–18 months, bringing new treatments significantly closer.
If you’d like to help drive this progress even further, there are many ways you can help.
Join Our Monthly Lottery
By joining the Joseph’s Goal Monthly Lottery, you’ll be doing something amazing. Every ticket supports life saving NKH research and helps families facing this devastating condition. And of course, you’ll be entered into our monthly draw for the chance to win.
A small contribution each month can make a huge difference.
How You Can Help
There are lots of simple and meaningful ways to support Joseph’s Goal. Whether you take part in a fundraiser, join our monthly lottery, make a donation, or help spread the word, every action helps drive NKH research forward.
Walk4Joseph
Joe’s Jumper Day
Monthly Lottery
Help Us Spread the Word
If you’d like to support Joseph’s Goal in your workplace, shop or community space, you can download our “Ways to Support” poster and display it proudly.
Every share helps us reach more people and raise greater awareness of NKH.