Proudly supporting Joseph’s Goal
The Wigan charity, Joseph’s Goal, was launched in October 2012, by Paul and Emma Kendrick to raise awareness and funds for research into Non-Ketotic Hyperglycinemia, (NKH), the rare life-limiting genetic disorder that their son, Joseph, was born with.
What is NKH?
NKH is a devastating condition caused by an excess of glycine on the brain that can result in frequent seizures, immobility, and global developmental delay. It affects only one child in 60,000 and only a small minority reach the age of two. There are currently only approximately 15 children in the UK, and under 500 worldwide still surviving with NKH.
Joseph’s Goal supports the research into NKH of Dr Johan Van Hove at the University of Colorado, Denver, USA, and Professor Nick Greene of University College, London, Institute of Child Health.
Excitedly, more NKH researchers are now coming forward, notably Boston Children’s Hospital and Dr Kasturi in Chicago.
Joseph’s Goal has enjoyed some iconic moments that have helped to raise awareness:
- 2013 – Joseph was carried out onto the pitch at Wembley Stadium by Wigan Athletic captain, Emmerson Boyce, as the mascot in the FA Cup Final against Manchester City. These TV pictures went around the world and resulted in Joseph and his parents being interviewed on Sky News the following day.
- 2013 – Joseph’s family were recognised by the Wigan Local Radio Station WISHFM as their Local Heroes Family of the Year
- 2014 – Joseph’s Goal was invited by Wigan Council to switch on the Christmas Lights in Wigan town centre.
- 2017 – Joseph’s Goal won the ‘Something to Shout About’ category at the Greater Manchester Chamber of Commerce Wigan Business Awards at the DW Stadium.
Joseph’s Goal has kept pace with the NKH research in the last five years and has hosted three conferences for NKH families. Two in Wigan and one in London, at which both Dr Van Hove and Professor Greene have presented their latest research. Also, Trustees from Joseph’s Goal have twice visited Boston, USA, to contribute to NKH conferences at Harvard University.
Advances in gene therapy have raised hopes that a breakthrough is on the horizon. The defective gene that causes NKH has been identified and the task is to successfully replace it with a healthy gene. Professor Greene has acknowledged that continued funding from Joseph’s Goal has accelerated his research into NKH by eighteen months.
Joseph’s goal is making a difference!
For the future, there is at last light at the end of a very dark tunnel, but more funding is vital to make it happen.
Joseph is now eight years old, having been given only ten days to live at birth.
Joseph’s Goal is still the only charity in the UK raising funds for NKH research and is run entirely by volunteers.
Please consider supporting our sponsored charity and help Joseph to achieve his goal!