jeans for genes day

 

 

 

 

September 18th – Jeans for Genes Day

What will you be wearing on September 18th? Getting your denims out, I hope!

Jeans for Genes Day is a National Fundraising Day.  The purpose of which is to  raise money and create awareness about genetic disorders.

Genetic Disorders in Numbers

The facts about genetic disorders are frightening to say the least:

  • 1 in 25 children in the UK are born with a Genetic Disorder;
  • The annual number of children born in the UK with a Genetic Disorder is 30,000;
  • There are over 6,000 different types of Genetic Disorders.

Giving birth to a child that is unwell or severely disabled must be difficult enough for parents.  Struggling for years with your child’s condition and no clear diagnosis must be very challenging.  Finally when you are given a diagnosis, to then be told your child has ‘a rare genetic disorder’ must be extremely traumatic.   In addition to the heartache of dealing with a sick and/or disabled child, how isolating it must feel to know that it only affects a handful of people?

Some diseases and disorders get a great deal of public attention.  They receive a great deal of  support and fundraising.  The flip side of this coin is that many genetic disorders fail to make the headlines because of their rarity.

This in turn can lead to a lack of understanding.  In some cases the children who suffer from some genetic disorders may suffer bullying and thoughtless remarks.  A friend of mine has a grandson who is 5 and suffers from a condition that’s affected his mobility.   For a while his mother continued to use a buggy but often heard remarks from passers by to the effect that the child was too old for a buggy.  The result?  She’s now invested in an expensive wheelchair for her son.

Genetic Disorders UK is a National Charity dedicated to supporting families affected by Genetic Disorders.  It acts as an umbrella organisation for charities which support specific disorders.  It’s annual fundraising day is called Jeans for Genes Day.   The money raised by Jeans for Genes Day is used to:

  • Run an annual grant programme.  This programme is open to all UK support groups and charities caring for children with genetic disorders.
  • Develop resources for schools.  Resources which help to make pupils more aware and empathetic of the difficult lives that other children lead.
  • Fund Genetic Disorders UK, the National charity dedicated to supporting families affected by genetic disorders.

I have a couple of friends who have children who suffer from rare genetic conditions.   It never fails to move me how cheerful and resilient both the children and the parents are.     There are some incredible children and families out there. It’s inspirational to watch and read their stories.

Ashley’s Story

Ashley has Treacher Collins syndrome.  This means he was born without a jaw, cheekbones and ears. The video of Ashley shows us how he gets around, the daily challenges that his symptoms present.  He also explains how he deals with the bullying that he has experienced as a result of his condition.  Watch Ashley’s story here

Maisy’s Story

Eight-year-old Maisy was born with the genetic disorder recessive dystrophic epidermolysis bullosa (EB).  This means that Maisy has a painful skin condition that makes the skin very fragile.
Read Maisy’s story here

Isabella’s Story

Five-year-old Isabella was born with the rare and fatal genetic disorder Tay-Sachs disease. Most children with the condition die between three and five years of age.
Read Isabella’s story here

Jeans for Genes Day at Want Her Outfit

Jeans for Genes Day has targeted a number of initiatives designed for the Workplace, Schools and Nurseries.  Hence it was thinking caps on at Want Her Outfit to decide how to help!

I decided to keep it simple and create more awareness about Jeans for Genes Day in two ways.

1. Donations for Jeans for Genes Day

I will donate £5 for every pair of jeans or chinos sold between 5th September and 18th September.

2. Awareness – Enter our Jeans for Genes Day Competition

Whether you use Facebook or Twitter why not help to create more awareness of Jeans for Genes Day.  In return for your support in raising awareness we’ll enter you in a draw to win a £50 voucher to spend with Want Her Outfit.  All you need to do is:

Facebook – like our page and share our Jeans for Genes Day Competition Post on your timeline;

Or on Twitter – follow Want Her Dress and Jeans for Genes and retweet the competition picture.

Simple isn’t it?  The competition is open now and will close on September 19th.

Thank you for helping us to support Jeans for Genes Day.

Leopard Print Skinny Jeans