Here at National Shower Spares, we like to participate in anything which benefits worthy causes, which is why this year, we are supporting Jeans for Genes Day 2021.
There are around 6,000 life-altering genetic disorders. Individually, genetic disorders are rare; together they are the biggest killer of children 14 and under.
Some genetic disorders are apparent at birth while others are diagnosed at different stages throughout childhood, adolescence and sometimes into adulthood, having a devastating impact on individuals and their families.
The Jeans for Genes campaign raises awareness of the daily challenges faced by those living with a genetic disorder and raises money to fund projects that make a tangible difference to the lives of those affected, like Skye, Josh and Rhys...
Skye has Rhett Syndrome that is robbing her of her ability to walk, feed herself or even speak. Money from Jeans for Genes enabled her special school to but an eye-gaze machine that allows her to communicate with others.
Josh has Norrie Disease, a genetic disorder affecting boys that causes not only sight loss but also deafness and developmental delay. Josh has been losing his hearing since the age of five and his parents are in the process of investigating the medical treatments available to prevent Josh from going completely deaf. In 2017 Josh’s mum Wendy was among a group of individuals who set up The Norrie Disease Foundation with the support of a Jeans for Genes grant.
Rhys was diagnosed at nine months old with a serious immune system disorder called Severe Combined Immunodeficiency, a life threatening condition caused by a single mutated gene. At the time, the only treatment available was a bone marrow transplant, but it was an incredibly difficult procedure.
With pioneering gene therapy, partly funded by Jeans for Genes, Professors Bobby Gaspar and Adrian Thrasher at St Ormond Street hospital created a revolutionary type of gene therapy. After a few weeks of receiving this gene therapy his immune system started to develop. Rhys is now 19 and has been able to live a full and active life.
Without Jeans for Genes these children could not receive the help they so desperately need.
So, on Friday 17th September, National Shower Spares will hold a ‘Jeans for Genes Day’. We will be proudly wearing our denim attire. We will also be holding a cake sale, and having ‘potty mouth’ boxes in each Department (obviously not much money will be raised here!!) Photos and donation update to follow…
Every donation, big or small, could make a difference to the half a million UK children with a life-altering genetic disorder, so please dig deep and give your small change to make a big change!
You can donate here.