Why do you fund Christmas parties and weekends away?
Many children with genetic disorders need special care, equipment or medication which makes being away from home very difficult. Family fun days, conferences and residential weekends are invaluable to both the children and their parents.
They give the children a chance to play in an environment that's safe and suits their needs. They can make new friends and try new activities. It's one of the only times in the year when they're not 'different' and they're the same as everyone else.
Caring for a child with a rare condition can be very isolating for parents. Family events help parents to feel that they're not alone. They can share experiences, get advice from specialists in their child's condition and have some much needed respite while their children play.
Families repeatedly tell us of the value of these events. Care and support are key, especially if a child's condition has no current treatment or cure.
back to top...
Why do you fund equipment which should be available through statuatory services?
Local authorities and primary care trusts have competing demands on their time and resources. It can take several months for a family to be assessed for a piece of equipment and it could take several weeks more to come once an order has been placed.
This can be far too long for some families whose needs might have changed by the time the equipment arrives.
There are also occasions when a piece of equipment would transform a child's life but it's not something that a statutory body is obliged to offer.
back to top...
Isn't it more beneficial to invest in research?
Research takes a very long time. It can take years to identify the gene responsible for a genetic disorder and many more to develop a treatment or find a cure. It's also very expensive and could be held up by a lack of funding.
For example, it costs £750 to fund just one day's work by a genetics researcher in the laboratory at the Institute of Child Health at Great Ormond Street.
We feel that it's important to strike a balance between helping to provide the immediate care that children and their families need, with the long term commitment to ongoing research.
Both of these are key to the long term goals of Jeans for Genes to change the world for children with genetic disorders.
back to top...