Caring Matters Now has been selected as recipient of a £4,000 grant from Jeans for Genes — a national children’s charity which raises money for the care of children with genetic disorders. Every half an hour a baby is born in the UK with a genetic birth defect or genetic disorder which could seriously affect their lives. Jeans for Genes helps to provide much needed help, support and information for children and their families. They also invest in ground-breaking research to establish the causes of these conditions and how they can be treated.
We are grateful that Jeans for Genes has awarded this grant to Caring Matters Now to help fund the patient registry at Great Ormond Street . This registry is one of the largest of its kind in the world and contains information from patients all around the UK. The data is used for research studies to determine the specific gene that causes the CMN disorder. Making sure the registry is kept up to date with all the latest information gathered from patients is essential to progressing this important work. In return for the grant, we will be helping to raise awareness about Jeans for Genes Day and to motivate people to raise money. Our participation is also a unique opportunity help to raise awareness about CMN and the issues faced by CMN sufferers.
So please mark your calendars and join us in supporting Jeans for Genes Day 2009. Gather up your friends and colleagues and instead of your usual work clothes or uniform on Friday, 2nd October , wear your jeans – and please make a donation to help children living with genetic disorders! For more information, visit the website.