Hollywood Bowl Group - Wigan

Joseph was given five days to live but reached his ninth birthday in May this year. 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 fifteen children still surviving in the UK, and less than five hundred 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. In four years we have raised over £340,000, largely from charity balls, football matches, bike rides, marathons and 10-Ks, swimathons, spinathons, Xmas jumper days, numerous other fundraising events, and hundreds of donations from generous people. The funds raised have been sent to Dr Johan Van Hove at Colorado University, Denver, USA, and Professor Nick Greene at UCL Great Ormond Street Institute of Child Health in London. Both have presented their research findings to NKH families at conferences in the North West organised by Joseph’s Goal, and trustees of Joseph’s Goal have twice attended NKH conferences at Harvard University in Boston, USA. The many varied defective genes that have been found in different children/families in the brain that causes NKH have been identified, and the task now is to find a route to replace it with a healthy gene. 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.