My Diary
It is now a month since Jacob passed away and I wasn’t sure about whether to post any more diary entries. This is, after all, Jacob’s website and was created to keep people up to date about his life and his battle against neuroblastoma. Now Jacob is no longer with us, I’m not sure if there is anything left to say and although we are asked constantly about how we are coping by so many kind and caring people, we have no desire to chronicle our life after Jacob......our hearts are broken and we feel an unbearable sense of loss and emptiness, we’ll leave it at that.
However, in the midst of our sadness there is an emerging belief that we can do something to help in the battle to find a cure for neuroblastoma. Jacob fought so hard against his illness and we have to make that count for something. To do nothing and simply try to get on with our own lives, although challenging in itself, seems wrong and somehow selfish.
It is early days, but our idea is to somehow use Jacob’s website as a fund raising platform for research into neuroblastoma. This is after all a rare cancer, predominantly diagnosed in young children and which receives no direct government funding in terms of research into a cure. There are though several organisations which seek to improve research into neuroblastoma and this is where we can do something to help.
There are two ways to find a cure for neuroblastoma. The first is to conduct research into the disease in order to find new treatments. The second is to explore, through clinical trials, how effective existing and new combinations of treatment are in improving recovery from the disease and, ultimately, lead to survival.
Over the past decade or so the Neuroblastoma Society has single-handedly funded about £2.5 million dedicated neuroblastoma research at specialist centres throughout the UK. A research study is only supported if it has passed a rigorous scrutiny by two or three experts chosen for their specialist knowledge of the proposed research area and then been evaluated and recommended by the Society's Scientific Advisory Board of leading neuroblastoma researchers and clinicians. Grants are then awarded by Trustees in the light of that advice within the limits of funds available.
Normally research grants are awarded in alternate years in order that there are adequate funds available to support major in-depth studies over three years if appropriate. Currently the Society is supporting thirteen studies with grant awards exceeding £1.7 million.
Click here to access Neuroblastoma Society.
Another foundation called Joining Against Cancer In Kids (JACK) is being developed by the parents of another boy with neuroblastoma called Jack Brown. Their aim is raise funds to enable new treatments being developed and trialled in the USA to become established in the UK also. During our time researching possible treatments abroad for Jacob we were very impressed by the range of treatments being developed in the USA. We therefore believe that the JACK Foundation has the potential to improve treatment for UK children.
Click here to access the JACK Foundation.
So, this is the plan; to help make a difference in the hope that one day, no child has to endure what Jacob did and that no parent will suffer the agony of loosing a child to neuroblastoma. We ask you all, relatives, friends and strangers, to pledge to do something, perhaps once a year, in Jacob’s memory. This could be anything, a run, swim, tupperware party, anything!!!
Whenever funds are raised these will be forwarded to either the Neuroblastoma Society of the JACK Foundation, or perhaps split evenly between the two. Many of you will have kindly raised funds for Jacob’s Appeal with The 2Simple Trust, I therefore apologise for asking more from you, but I’m sure you will agree this is a very worthy cause.
We will doing the same and you can expect to see us either climbing, running or cycling (most likely crawling!) up something very steep in the near future.
In the meantime, please consider joining us. You can contact me on the usual email with any ideas you have, or future commitment you feel able to make:
We can all continue to make a difference.........
Thank you
Anthony and Nicky.
Friday, 6 February 2009
A Simple Plan
