Raul is my lovely nephew…..
Please see notes below, every penny counts
Chetan Kotecha
|
About the charity : Action Duchenne
Action Duchenne is a national charity that aims to find a cure for Duchenne, a severe genetic muscle wasting disease. The condition affects mainly boys and without treatment most of these young men are completely paralysed by their early teens and die by their late teens or early 20s. To ensure we do not lose another generation of young people to this terrible disease we need more funding for research and treatment.
Charity Registration No 1101971
|
Click on link below
http://www.justgiving.com/raul
Personal
message:
This is Raul my beautiful happy "normal" 5 year-old son who was recently diagnosed with Duchenne Muscular Dystrophy, a horrific muscle wasting disease for which there is currently no cure or treatment.
Raul has a fantastic appreciation for his life, family and friends. He loves to swim, ride his bike, run around with his friends or just play with his toy cars. He knows that his muscles are weak but he has no idea of the devastation that the doctors have predicted for him. To our astonishment, we were told in no uncertain terms that these are Raul's best years. From the age of 7, Raul will become progressively weaker. By the age of 11, he will no longer be able to walk. His upper body muscles will continue to waste away until his heart muscles or respiratory muscles cave in. It is said that children with Duchenne die in their late teens or early twenties.
A genuine treatment could be round the corner. There are leading doctors and scientists in the field who in the last 20 or so years have gained a great understanding of the path that the disease takes and have made great advances. These amazing people offer Raul and other children in Raul’s position hope. However, their work is progressing at a snail’s pace in the context of Raul’s life due largely to gross underfunding.
I am convinced though that with your help, we can change Raul’s prognosis. There is a real chance of finding a cure or a long-term treatment for Duchenne not just during Raul’s life but before he has to face the prospect of never being able to walk again.
Please help. Please donate generously. Please also ask all your friends and family to do so too.
http://www.justgiving.com/raul
|
|
|
The AGM will be taking place on the Sunday 27 April 2008 straight after the Bhajans event. There are some opportunities in the committee for anybody young, old or middle aged who would like to contribute - please attend the AGM and put yourself forward.
Everybody has something to offer! |
|
As you can imagine this is a mammoth task, and I am pleased to say it is progressing.
If you are aware of ANY address or telephone number changes, kindly please contact Harsh Jani by email,
This email address is being protected from spam bots, you need Javascript enabled to view it
.
|
|
Read more...
|
|
|
We regret to advise the loss ofthe following community members who have passed away recently:
|
|
Read more...
|
|
|
Malawi Book Drive by Roopal Kanabar |
|
I lived in Malawi till I was 18, attended an international school, I always had the intention of going to University abroad, this made me rather oblivious to the standard of higher education in Malawi.
|
|
Read more...
|
|
|
|
