A few months ago I learnt that I had been successful in my application to be a member of the Scientific Advisory Board for the Brain Tumour Charity. This basically means I can help in some small way by reading through research proposals and working with neuroscientists to distribute funding to the most promising applicants.
So far it has been a thoroughly eye-opening experience as I have seen firsthand just how strong the competition for funding really is. The work that the charity does still amazes me and without them, millions less would be spent on research or awareness every year.
I have truly valued hearing from other families affected by brain tumours, each with their own unique and touching story to tell. Just this week I was fortunate enough to be invited along to the Structural Genomics Consortium in Oxford for a laboratory tour. Here I learnt that it can take years to re-create the proteins required for testing (the first step on the way to finding medicinal cures) and that they are one of only a few groups of scientists worldwide willing to share their investigations with the world (other scientists keep their work closely guarded in pursuit of financial gain from pharmaceutical companies). Their hope it that this will speed up the end result that so many of us affected by brain tumours are hoping for.
The sheer scale of the equipment they require totally floored me and each piece costs thousands of pounds. The funding that the charity receives goes in some way to support these scientists in their projects. It just reminded me that although they may have a long way to go, we have some brilliant minds focusing their lives’ work on a healthier, happier future for our world. If I can support them in any way I will and I hope other people may read this and send a few pennies in the direction of The Brain Tumour Charity.
On a personal note, we have had a beautifully sunny week and I wanted to share this lovely smile with you! I’m so lucky to have a husband as wonderful as you Alex! Xx
Alex has been home for 7 weeks now and it is wonderful. To be the 3 of us again and not have daily hospital trips feels like we have a little bit of our life back again. It is a different life from the one we lived before but it’s our life all the same.
So many families that go through the pain of brain tumours never get the chance to be together under one roof and so I am so thankful….. But it’s hard. I knew it would be and yet (a bit like childbirth!) nothing can prepare you for it.
The realities are that I sleep with one eye open, get up early to organise medication, juggle motherhood and care (to make damn sure our daughter has the wonderful childhood she deserves and that mummy & daddy planned together) and most of all…. Sit quietly and very alone each evening. I could be surrounded by other people and yet still feel desperately alone because he is my soulmate (I refute any claims that they don’t exist but that’s another matter!) The loneliness of not being able to talk with Alex can be almost unbearable. Admittedly he very rarely got a word in edge ways before, but now…. What I would’nt give to hear his voice! For him to tell me I’m doing ok, doing the right thing, doing what he wants. Mostly I miss his cheeky smile and his laugh – not the average laugh everyone else saw, but his totally at ease, only in front of me ‘geeky laugh’.
But when you are in love with someone as much as I love our Alex ( and daddy!), nothing will stop me caring for him to the best of my ability, everyday of my life….. Because sometimes, I get that smile, or kiss, or few words and it all feels ok.
Have a read to see the recent parliament publication on brain tumour research! A step in the right direction! Xx
Visit the site below for a chance to win a bundle of prizes worth over £450! All you have to do is kindly make a donation to the Brain Tumour Charity and send in your loveliest picture of a little one (be it your own cutie or niece/ nephew, godchild). Win amazing prizes and make a difference to brain tumour patients all for £2 a go! Huge thank you to Michelle for organising such a worthwhile fundraising activity! Xxx