Jeans for Genes Day is an event that takes place nationally every year. This year it’s on Friday 23rd September, with people in workplaces and schools wearing their jeans to raise funds and awareness for genetic disorders in the UK.
So what is it all about?
There are over 6,000 diagnosed genetic disorders in the UK, with up to 1 in 25 children affected by it.
30,000 babies and children are newly diagnosed in the UK each year. Although each genetic disorder looked at individually is very rare, when looked at in their entirety, they affect a large number of children and adults. Some genetic disorders are apparent at birth, while others are diagnosed at different stages throughout childhood, and sometimes even into adulthood.
This means that there are more than half a million children and adults in the UK that are living with a genetic disorder. Jeans for Genes Day is highlighting this problem and doing something to help those families affected.
Jeans for Genes Day - A history
Jeans for Genes Day is run by Genetic Disorders UK. It is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. The event has now been running for over 20 years, and so far, has raised well over £35 million.
The funds raised from the event are then used by Genetic Disorders UK to give grants to charities, groups and individuals. This can be used in research or to improve the quality of life and to give information to those who need it.
Some examples of genetic disorders in children include; Duchenne muscular dystrophy, cystic fibrosis, sickle cell anaemia, and Rett syndrome. These disorders range in severity and the age of onset. Most give a reduced life expectancy, but not all.
An example of the success of the Jeans for Genes Day Grants was the funding given for a programme in the development of gene therapy at the UCL Institute of Child Health in London. This programme has since cured 10 children of the life-threatening condition, x-linked severe combined immune deficiency (baby in the bubble syndrome). An amazing result.
The charity also aims to raise awareness and understanding of genetics and what it means to live with a genetic disorder. It provides educational materials for schools and support materials for families. It really is a vital resource to so many.
For more information please go to Jeans for Genes Day.