Ellie has CHAT, a form of myasthenia gravis
Jeans for Genes is supporting eleven charities in 2010.
CGD leaves children very susceptible to bacterial and fungal infections.
It can cause abscesses on their internal organs, continuous bowel problems and serious chest infections.
The CGD Research Trust benefits each year from Jeans for Genes Day.
We help to fund a variety of projects including a psychological support service and CGD clinical nurse specialists.
Read more about the CNS nursing service...»
It can take some families years to get a diagnosis for their child's genetic condition. But some parents never get one. Their children have SWAN or 'syndrome without a name.'
Their support group is in danger of folding due to retirement. But Genetic Alliance UK (formerly the Genetic Interest Group) are taking on the role with our help.
The funding GOSHCC receives from Jeans for Genes is invested at the hospital’s paediatric research centre, the University College London Institute of Child Health.
You can help to support several projects each year, from PhD research grants to ongoing work by senior academics at the Jeans for Genes Centre for Inherited Diseases. Read more about the work you're helping to fund...»
Headlines support children with craniosynostoses. These are conditions in which the bones of the skull are fused prematurely. They can have both severe health and social implications.
To help youngsters improve their self-confidence, Jeans for Genes is funding a workshop with horses. Gentle and non-judgemental, the animals will also help the children develop their non-verbal communication.
Ichthyosis is a rare and potentially fatal skin condition. It causes continual scaling of the skin. Children get infections very easily and some of them are also unable to sweat. Jeans for Genes is giving the ISG a grant towards its national conference. Families can can meet and know they're not alone. And the children can see others who look like them.
Fewer than 10 babies a year are born with Costello syndrome. It causes severe learning difficulties, heart and skeletal problems. Children are also at an increased risk of developing cancer. We're proud to be helping families with Costello syndrome come together for the very first time in the UK at their first annual retreat.
Klinefelter's syndrome affects boys and can cause infertility, sparse facial and body hair, and a less masculine body shape. Boys and men can have low self confidence because of the differences in their bodies and they can find social situations difficult. By supporting an activity weekend, you can make a dramatic difference to how boys and young men feel about themselves.
Congenital myasthenic syndrome affects the messages between the brain and the muscles. Repetitive movements like walking, breathing, eating and drinking become difficult or impossible. With our help, the MGA are setting up an outreach programme. One of its key aims will be to help families get the educational support their children need and are entitled to at school.
Children born with a primary immunodeficiency have little or no natural defence against infections. Those children with the most severe forms often don’t live beyond their first birthday. Your fundraising helps the PiA every year. Currently projects include a five year research programme at Oxford University and the Oxford Radcliffe Hospitals and comprehensive support and advocacy activities for children and adults.
Children with mucopolysaccharide diseases gradually lose the ability to move, and in many cases, their mental function deteriorates too. Jeans for Genes provides funding to the MPS Society each year. It's invested in research to find treatments for some of the 21 different MPS conditions. It also supports regional clinics for families.
Sickle cell anaemia can cause attacks of extreme pain. The blood cells, which should be round, 'sickle' or turn banana-shaped when they give out their oxygen and they get stuck in the blood vessels. This can also cause a stroke. You can help us to fund a workshop for young people. They can share their experiences, learn how to be healthy and their families can share their worries.