Wear your jeans to raise money for family support for children with genetic conditions.
Jeans for Genes Day is a very straightforward kind of charity day. Wear jeans wherever you are. Whatever you’re doing, to raise funds and awareness for genetic disorders. You might be a Peer in the House of Lords. A School Teacher. A Pupil. Or Accountant. It is Jeans for Genes Day so you do, what you do, in your jeans.
There are over 6,000 diagnosed genetic conditions. And 1 in 25 people in the UK have a genetic condition. I bet you know someone with a genetic condition? I do. A four-year-old girl called Eliza springs immediately to mind. She has Rett Syndrome, a rare neurological disorder affecting mainly females – around 1 in 10,000.
Children develop normally up until about 18 months old, but then start to lose speech, hand skills and often the ability to walk. Children with Rett Syndrome require life-long 24-hour care.
Family Support Grants to Rett UK
Rett UK is one of the beneficiaries of Jeans for Genes Day, using money from grants to support families, facilitating networks, providing information and practical support.
Eliza’s mother Catherine McKinney says that the support she received from other families living with Rett has been vital:
“When Eliza was first diagnosed I felt completely alone and very scared. I didn’t know anyone with Rett or any children with special needs.’
‘I immediately went online looking for information and what I found often presented a very bleak picture. It was devastating. I had a lot of support from family and friends but meeting the family of another girl with Rett was a vital breakthrough in my understanding of the condition and in how we would live with it. I learned that it’s not all bleak and there’s a lot of hope.’
Catherine also has a boy, Angus, aged 6 and a girl, Nina, aged 2, she says:
‘Getting to know other families also means Angus and Nina have the chance to play with siblings who, like them have a sister with Rett. Other kids who understand what life is like for them – that’s really important.”
This type of support is a lifeline for families, however funding for charities like Rett UK is very limited. In Scotland where Eliza lives Rett UK family support events are like are hen’s teeth.
A Big Voice For Small Charities
The problem is there are over 6,000 diagnosed genetic conditions, each represented by a very small charity, doing their best on grassroots fundraising to provide information and support for sufferers, parents and families.
Alone their pleas are drowned out by the charitable call to arms of the big causes. Which is where Jeans for Genes Day comes in. Someone somewhere had the brainwave that collective fundraising for genetic conditions gives these small charities a much louder voice.
Together, under the Jeans for Genes Day banner they can generate a bit more noise and hopefully a lot more dosh to spend on supporting families like the McKinney’s.
What You Can Do To Help
Raising funds for Jeans For Genes Day can be as simple as organising a ‘wear jeans day’ on or around the 18th September and making a donation here.
There are also a host of related activities and ideas aimed at Primary and Secondary schools, workplaces and nurseries, on the JforG Day website, along with a host of toolkits and supporting material.
Here’s How Your Money Will Be Spent
- £10 will pay for 60 minutes of specialist telephone advice for parents caring for a child with severe neurological genetic conditions.
- £50 will pay for a mother to attend a support day, giving her the help she needs to care for an extremely rare and profoundly disabling genetic condition.
- £100 will help fund an educational booklet, helping teachers to maximise opportunities available to children with inherited learning disabilities.
- £350 will pay for a child with a genetic disorder to spend a weekend away with other children like them, supported by trained medical staff.
- £1,000 will help fund a film for teenagers with a life limiting condition, helping them to come to terms with, and encouraging them to begin to take responsibility for, their condition.
- £1,300 will give a child who has lost the ability to speak access to a Tobii Eye Gaze machine, so that they can communicate with their eyes.
- £2,000 will pay for a specialist nurse to support families affected by genetic disorders.
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