Hi Everyone,
I've not posted on this forum before, despite having read lots of the posts and followed it on and off since the beginning. I am the daughter of someone who's name will be familiar to most users of the forum, even if you don't know her personally - Pat Pinchin. The reason for this post is to ask for photos for a unique online fundraiser that I'm planning.
Some may be aware of an on-going fundraising venture I set up a few years ago called Bespoke Poems in aid of Amyloidosis. It does pretty much what it says on the tin, and I write bespoke poems for people - usually to give to loved ones as gifts for special occasions like big birthdays or anniversaries - in exchange for a donation to the UCL Amyloidosis research fund.
One poem that I wrote a while back is about the disease itself, and I have now had it recorded in rap form, with the hope of catching people's attention online and getting them to donate online or by text message. My mission now is to collect photographs to create a visual to go with the recorded poem. I would like to collate photos of sufferers of Amyloidosis and their families, for a simple slide show to go with my soundtrack of the rap. The idea of this is to make sure that the message is poignant and hard-hitting but also very real, and I can only achieve this with genuine photos. I will naturally be including a photo of my own family. The photos will need to be clear so that the people in them can easily be seen. They could be everyday, natural photos or posed photos, happy/fun or sad/serious. In fact the bigger variety the better. It might be nice to also include photos of NAC staff too if anyone is willing? I will need them to be sent to me digitally and it's important to me that you can guarantee that you have the consent of whoever appears in the photos, or parental consent if there are any children in them, especially since they will be posted online. I don't intend to include names.
I understand this won't be for everyone, but if you are willing to take part, I will be incredibly grateful and look forward to receiving any such photographs at the email address below. It is my aim to email a version of the completed slide show to anyone who sends me photos, before it is posted online, just to check everyone is happy with their part in it. Please send photos to:
hellobespokepoems@gmail.com
Below are the words of the poem/rap that will be the soundtrack to the photos:
An unusual diagnosis.
A sobering prognosis.
A rare debilitating illness.
A ferocious pathosis.
Clinically precocious.
The answers are ambiguous.
Other people are incredulous.
All so emotionally divisive.
Longing for something decisive,
instead of just derisive
to help me out of this crisis.
Don’t have room to list
all the things in life, I miss.
Has it really come to this?
Got to focus on the positive,
despite the suffering and sickliness.
A CURE for AMYLOIDOSIS
is my single biggest wish.
You can find more information about Bespoke Poems in aid of Amyloidosis on the website:
http://www.bespokepoems.com/or the FACEBOOK page:
https://www.facebook.com/pages/Bespoke-Poems-in-aid-of-Amyloidosis/1407907482813486and donations can be made here:
https://www.justgiving.com/fundraising/bespokepoemsamyloidosisThank-you so much for reading. I hope to hear from some of you soon.
Best wishes,
Chloe