Joseph's Goal
Health
We want to find a cure for Nonketotic Hyperglycinemia and support families until one can be found.
About this cause
We provide support for families with Nonketotic Hyperglycinemia - a terminal metabolic disorder that effects children. NKH is incredibly rare. Because it's so unknown there is little awareness and support for families. Through our fundraising, we support new families recently diagnosed with NKH, linking them with other families. We provide emotional support through the initial shock, living with NKH until their child passes. We organise an annual conference, vital to bringing support and research to families in the UK. We also fund research into NKH, specifically through UCL towards a gene therapy cure. We aim to fund a cure within the next five years, hopefully raising around £800,000 to do so. Until a cure is available, we raise awareness and support families as best we can.
How this cause brings people in the community together
By providing support and information for NKH families, we'll be improving the lives in a local community, reducing the support required elsewhere. When a cure is found, the lives of each family and those in their community will be drastically improved, and will edge towards normality.