Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Children with Barth syndrome given grant from
Jeans for Genes Day 2016
Barth Syndrome Trust is celebrating after receiving the news that we will be given a grant from Genetic Disorders UK, the national charity that organises the annual fundraising day, Jeans for Genes Day. This donation from funds raised on the day will be used to fund a Family Activity and Information Weekend in 2017.
Genetic Disorders UK’s Jeans for Genes Day is an annual fundraising event when school children and office workers wear their jeans in exchange for a donation to the charity. Although individually genetic disorders are rare, together they affect 1 in 25 children. This means that more than 30,000 babies each year are born in the UK with a genetic condition. Sadly, genetic disorders and their associated health problems mean that they are the biggest cause of death of children aged 14 years and under. Funds from Jeans for Genes Day are granted to specialised charities to provide care and support for children affected by genetic disorders. This year Jeans for Genes Day will be held on Friday 23rd September.
Caroline Harding, the CEO of Genetic Disorders UK said: “We are delighted to be helping Barth Syndrome Trust support children with Barth syndrome. Our grant programme is open to all UK support groups and registered charities who work to improve the lives of children and families affected by genetic disorders. In 2016, 22 charities will benefit from the funds raised by the public on Jeans for Genes Day.”