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    « Sewlicious by Kate Hexell book review | Main | All the plans - and no action! »
    Wednesday
    Aug272014

    The ice bucket challenge, awareness and DIPG

    I was nominated for the ice bucket challenge yesterday. I have mixed feelings about these challenges. On one hand, they raise awareness and clearly do raise money for charity so that's got to be a good thing, right? On the other, lots of people just do it to be part of a group, without bothering to find out anything about the charity, or donating any time or money. 

    The ice bucket challenge is intended to raise money for research into a cure for ALS, which is a type of Motor Neurone Disease. It's a cruel disease, and not a pretty one. I have only known one person that had it, and it's nasty. It attacks your brain, destroying the motor nerve cells that control movement but generally leaving memory & cognition intact. Movement, speech, breathing become difficult - and you remain the same person inside, but less able to express yourself.

    Despite all the concerns about wastage of water (although that's less of a worry in soggy gloucestershire), and the feeling that it might really be more of a viral wet t-shirt contest than real fund raising, I can't help but think that any awareness raising has got to be a good thing, even if not everybody learns why they are chucking ice water over their heads.

    I did the ice bucket challenge despite my mixed feelings, but am not posting the video online. That is partly because my phone didn't record it very well and it came out all wierd. It's also partly down to vanity - I unwisely wore a swimsuit next to my slender lovely friend and I don't come out of it well in comparison. But I will donate to charity. Just not to the MND charity that is so very worthy.

    With a viral campaign like this one, I think it is also worth highlighting small charities where small amounts of money have a big impact. Regular readers know I'm keen to promote awareness of autitstic spectrum disorders as my oldest son is on the spectrum. But the NAS is doing amazing work raising awareness and campaigning for people on the spectrum already. Don't get me wrong - it is important work that relies on donations, but I would like to do my bit, small as it is, to raise awareness of a disease that far fewer people know about.

    When I was a teenager, Dad was based in Ramstein, Germany. All the british kids would get together in the school holidays and hang out in a large group. I've kept loosely in touch with a few of them, helped out by facebook. A few months ago, one of them got horrifying news. Her 6 year old daughter, Daisy, was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma). DIPG is a devastating brain stem cancer that has so far been incurable. It affects children, mainly between the ages of 5-10 years old. The prognosis shares a lot of the devastating problems that MND sufferers face. Unfortunately, children's brain tumours get very little research money allocated to them. 

    Bristol Children's Hospital have a research team dedicated to DIPG. They have come up with a pioneering way to get to the tumour so that they can inject chemotherapy directly into the tumour itself without (hopefully) damaging any vital functions. The implant device is 3D printed in titanium, and Daisy is the first child to try this experimental treatment. The funds raised so far in Daisy's name have paid for an extra 2 part time researchers. Small donations are essential to charities like this, and can make a huge impact. I don't know if Daisy can be cured, but hopefully her family will have her for longer than they would without treatment. 

    I've already made a donation, but I'm going to make another small donation to the fund for my ice bucket challenge. You can donate at Just Giving or by texting BROO65 followed by the amount to 70070. 

    If you can spare a little bit of money, it will make a difference right now. I did a text donation for £3 this time. I really believe that a little is better than none! If you don't want to donate, that's fine - thanks for reading all the way to the end. And I would love to hear if there are any charities or causes that you want more people to know about - let me know in the comments. I'd love to learn more about them xx

    ETA - The fundraising page on facebook can be found here if you want to keep updated on how things are going

    Reader Comments (2)

    Thank you for donating and for raising awareness of Daisy's condition. I've just been in and stood watching her sleep (as I do every night before I go to bed) and I wonder how many more nights I will be able to do this. It's just heartbreaking...

    August 27, 2014 | Unregistered CommenterAnna

    Anna, I have everything crossed for you and Daisy and if there is anything at all I can do - just ask. Have you seen the Abbiesarmy twitter account? UK based, lots of followers, kindly retweeted ths post.
    I really hope that people reading this donate, and I firmly believe that every pound helps. I hope you get to see her sleeping safely for a long, long time xxx

    August 28, 2014 | Unregistered CommenterJacqui

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