Every thirty minutes, a baby in the UK is born with a genetic birth defect or disorder that could seriously affect them for the rest of their lives. Jeans for Genes Day, held on 3rd October 2008, aims to raise money to support charities and organisations that help such children and their families.
Genes are what make us exactly who we are. They determine everything from our eye and hair colour to personality traits, and little details can be carried down through our genes through generations of family members. Some children, however, are born with a tiny modification to one or more of their genes. They might even be born with some missing. Any slight change can mean a genetic disorder, and a huge impact on the lives of the child and their parents.
Half of all childhood deaths are related to genetic disorders, and there is a wide spectrum of ways that children can be affected by problems in their genes. Some can be treated and cured; some have no cure. The charity aims to change this by funding research into both widely known and extremely rare conditions.
X-linked severe combined immunodeficiency (X-SCID) is a rare condition, often referred to as ‘baby in the bubble syndrome’ as, due to their lack of resistance to infection, children have to be kept in a sterile environment. One approach to tackling this condition is gene therapy, currently a pioneering treatment, where a copy of the working version of the faulty gene is put into the body.
Chronic granulomatous disorder, or CGD, stops children from being able to fight off certain infections because of a problem creating white blood cells. Sufferers can bruise very easily, so have to take care in everyday activities, and they are particularly susceptible to bacterial and fungal infections, which can cause painful swellings on the body. There is no cure for the condition, and families of children with CGD have to manage the condition with care and medication.
Phenylketonuria is a genetic disorder affecting what the sufferer can eat. Phenylalanine is a building block of protein, and having PKU means that the body can’t break down these building blocks. If the child has too much protein, the short term effects would include tiredness and lack of concentration; longer term, it could affect brain development and cause permanent damage. Those with PKU have to check their phenylalanine levels and monitor what they eat, to make sure food doesn’t have too much protein in it.
Jeans for Genes Day is held once a year, and to take part a small donation of £1 for school pupils and £2 for members of organisations is asked in return for wearing jeans for a day instead of the usual office-wear or uniform. The national day is when most events take place, but anybody interested in taking part can do so any day, if the set date is inconvenient.
During the past twelve years, over £30million has been raised by the charity, and around £3million is now contributed each year. The idea for Jeans for Genes Day was started in Dorset in the early 1990s, where two brothers with the condition chronic granulomatus disorder (CGD) inspired family to raise money for research into the condition. Working with the emerging charity, The Chronic Granulomatous Disorder Research Trust, an ‘auction of promises’ was carried out, initially raising £7,000.
This spurred the family and friends on to extend their fundraising and the idea for Jeans for Genes Day was developed, aiming to appeal to a large number of people. All across the country schools took part, and in its very first year of the day being created, £55,000 was raised. In 1996, the three following charities were invited to join Jeans for Genes Day to make it a nationally recognised campaign.
The Primary Immunodeficiency Association works to improve the lives of children and adults who have primary immunodeficiencies, which means they have little or no defense against infections. It is caused by a faulty or missing gene, and children with the severest forms rarely live beyond their first twelve months.
The Society for Mucopolysaccharide Diseases also joined. This charity is involved with those suffering from mucopolysaccharide diseases, which cause progressive physical disability and can damage the nervous system. The conditions are rare, but many with them die in childhood.
Great Ormond Street Hospital Charity was also a founding charity, and their research sector, The Institute of Child Health, performs invaluable research.
During the first year of the collaboration of these groups, £860,000 was raised. The continued support of all four charities has enabled Jeans for Genes Day to grow in popularity and continue to raise large amounts of money for many deserving recipients.
As well as the donation for wearing denim, the charity has plenty of fun ideas that can be carried out throughout the day. The fundraising this year is based around the theme of ‘generations’, and there are plenty of money-generating ideas to go along with it.
Jeans for Genes’ collaboration with MyDish is one example. With this initiative, fundraisers can swap and share their favourite recipes to create their own cookbook, with a proportion of the cost going to Jeans for Genes. Lisa Pettifer from Jeans for Genes says: “Our fundraising theme for this year is all about the GENErations; what families share and pass down to each other. Together with our supporters’ love of cooking, this is a perfect fit with MyDish. The team here have created a cookbook to start everyone off with favourite family recipes of our own, as well as recipes our celebrity chefs such as Antony Worrall Thompson have inherited.” Visit http://jeansforgenes.mydish.co.uk for more information. Other suggested ideas include dressing up in denim styles from various generations, playing ‘guess the generation’ with pictures of various grandparents, or carrying out a good old bake sale to raise funds.
The money collected by the charity goes to help numerous children and families throughout the country. With over 4,000 recognised genetic conditions, and more that are yet to be identified, there’s no shortage of people needing help. This year, 18 charities are being supported; these charities either provide care for children with genetic disorders and their families, or perform research into the causes and cures for their conditions.
The Teenagers’ weekend with Headlines Craniofacial Support will give young people between 11 and 18 the opportunity to take part in an activity and support weekend. CraniosysThe Teenagers’ weekend with Headlines Craniofacial Support will give young people between 11 and 18 the opportunity to take part in an activity and support weekend. Craniosystenosis is the premature fusing of the seams separating the bones of the skull, meaning that there is a lack of space for the brain to grow and resulting in problems with breathing and sight. Those affected often have to go through various operations, and tend to look different to other children. This project aims to help them build their confidence and have fun in an environment where they are no longer the one who looks different.
Great Ormond Street Hospital , home to the widest range of paediatric expertise in the UK , annually receives funding to finance its expensive research into genetic disorders and treatment. Projects this year include looking into how gene therapy can be used to treat cystic fibrosis; investigating whether ‘immunotherapy’- the modification of the body’s own immune system to attack unwanted cells- can be used to tackle a type of cancer called Ewing sarcoma; and research into unique heart valve treatments for children with genetic cardiac disorders, which will carry far fewer risks than open heart surgery.
The MOVE mobility programme will be receiving a grant to provide training to teachers, therapists and parents. The programme works with severely disabled children to improve their mobility and independence, and by informing various people involved in the child’s care of how they can effectively help them, the child is more likely to achieve their goals- whether it’s something as simple as lifting their head, or wanting to play sports with their friends. MOVE means that children can make progress in a positive manner whilst keeping health complications to a minimum.
Ms Jones, a teacher from North Wales, thinks the scheme is a good idea: “We have children with genetic disorders come through the school, and they can encounter problems fitting in because they look different, or have missed time at school for treatment. Sometimes other teachers; and even parents; don’t know how to work with such children simply because they don’t know what to do. This programme would be hugely beneficial to any affected child.”
There’s plenty of fashionable merchandise available to help raise funds. Designed new for 2008 by a student from the London College of Fashion, and chosen by designer Wayne Hemingway and fashion guru Nick Ede, the funky X and Y chromosome t-shirts in black or white for men, women and children are the perfect item to go along with your denims on the day. For something useful all year round there’s the Jeans for Genes cotton shopping bag, or buy a selection of 50 balloons with slogans on to promote the day for £5. Fifi & the Flowertots zip-pulls, coming in four new designs for 2008, can be bought individually from the website or in a ‘sale or return’ box for those with a premises.
As an extremely worthy cause helping children and their families throughout the country, it’s definitely worth getting involved. Find out what’s going on in your local area, or run your own event on the day. Resources are available on the website, along with even more information about genetic disorders, case studies of children with various conditions, and the exciting things the charity have been getting up to during the past year.
For more information call 02071 993300 or visit www.jeansforgenes.co.uk
