The Joseph’s Goal charity was set up in October 2012, by Paul and Emma Kendrick, to raise funds for research into Nonketotic Hyperglycinemia), (NKH), the life-limiting genetic condition that their son, Joseph, was born with. NKH is caused by an excess of glycine on the brain.
Joseph was given just ten days to live at birth but will be ten years old in May 2019. He is severely disabled and suffers from seizures.
But he is resilient and is a fighter, and we, in turn, are fighting to find better treatments and, hopefully, a cure for NKH, which is very rare, with only around twenty children still surviving in the UK, and less than five hundred children surviving worldwide.
Joseph’s Goal is a Wigan-based charity, run by a small group of family and friends, who all volunteer their services. No-one is paid. We have received support from Wigan Council, Wigan Warriors and Wigan Athletic, as well as schools, local organisations and the business community.
Joseph’s Goal ambassadors include the Leader of Wigan Council David Molyneux, Wigan Warriors captain Sean O’Loughlin, and Wigan Athletic captain Sam Morsy.
Joseph’s Goal is currently Charity of the Year for Nice-Pak, Arnold Clark, Wigan, Launch Events, Visions, and Orrell Red Triangle Cricket Club.
In seven and a half years Joseph’s Goal has sent over £800,000 to NKH research, largely from Walks4Joseph, charity balls, Latics Legends football matches, bike rides, marathons and 10Ks, swimathons, spinathons, Xmas jumper days, charity box collections, numerous other fundraising events, and hundreds of donations from charitable people.
The funds raised are sent to Dr Nick Greene at UCL Great Ormond Street Institute of Child Health in London, who leads the UK arm of NKH research.
Dr Greene is making great strides in gene replacement therapy – the defective gene in the brain that causes NKH has been identified, and the task now is to find a route to replace it with a healthy gene. Dr Greene has acknowledged that funds received from Joseph’s Goal have accelerated his research into NKH by between a year and 18 months.
There is, at last, some light at the end of a very dark tunnel, with real grounds for optimism that better treatments for NKH are not far away.
Joseph’s Goal is still the only NKH charity in the UK and is now the biggest fundraiser in the world for NKH research.
Awareness of Joseph’s Goal has spread, and major fundraising for the charity is now taking place in London, Gloucester, Wolverhampton, Northampton, Sheffield, Barnsley, Newcastle, Cumbria, Liverpool, Glasgow, USA and Australia.
We are hopeful that 2020 will be the year that breakthroughs in NKH research are made, and Joseph’s Goal is determined to maintain our level of fundraising to make this happen.
We urge the public to support our events, organise their own events, or make donations.
Since Joseph’s Goal began, Joe has become a little celebrity locally:
- in 2013, he was the mascot for Wigan Athletic in the FA Cup Final and was carried out onto the pitch at Wembley by the captain, Emmerson Boyce, which resulted in television appearances on BBC NW, Granada, and Sky News;
- in 2013, Joseph’s family were the WISHFM ‘Local Heroes Family of the Year’;
- in 2014, Joseph switched on the Xmas Lights in Wigan Town Centre;
- in 2014, Joseph’s Goal was recognised by Wigan Council as contributing to the ‘Believe in Wigan” campaign;
- in 2017 Joseph’s Goal won a GM Chamber of Commerce Wigan Business Awards in the ‘Something to Shout About’ category;
- in 2018 Joseph appeared on BBC Match of the Day, meeting Manchester City manager, Pep Guardiola, at the Wigan Athletic v Manchester City FA Cup tie;
- in 2018, Wigan Warriors wore the Joseph’s Goal logo on their shirts for the Super League match against Catalans in France;
- in 2018 Norman and Ann won the WISHFM ‘Lifetime Achievement’ Award for roles at Joseph’s Goal and helping to care for Joe;
- in 2019 Joseph’s Goal won the Special Achievement Award at the E3 North West Business Awards.
Joseph’s Goal has organised four NKH Conferences in the UK for the families of children with NKH, at which the leading NKH researchers in the world have made presentations on their research.
The Kendrick family have attended four reciprocal NKH Conferences in Boston USA.
If you are looking for a charity to support, would you please consider Joseph’s Goal!