So …. what do you think of my little feathered friend here?
Quite pretty isn’t he? I’ve been playing when I should be packing, or worse, cleaning! We have friends coming to house sit while we’re in Paris this weekend (OMG we’re going to Paris!), so they’ll probably be less than impressed with the sink full of washing up and possibly won’t quite understand that creating pretty papers is much more interesting.
Well you’ll be pleased to know that I plan to blog from Paris, giving you the low down on the state of the pavements, the cost of a croissant and chocolat and the real deal on how small the Mona Lisa actually is…
But in the meantime, it’s time for a bit of unashamed awareness raising.
The above paper is being dangled teasingly before your eyes, but is not available as a download for free. You see, like many people, we are watching a loved one (Adrian’s mum) suffer from a debilitating illness and it’s one that’s so rare, most medical professionals have never heard of it, let alone the general public. It’s called Progressive Supranuclear Palsy – yeah, just trips off the tongue, doesn’t it. We call it PSP for short.
Alma was diagnosed over eleven years ago and has already outlived the normal life expectancy of 5-7 years from diagnosis. She’s a stubborn little fighter and we love her for it.
Now I’m not asking for sympathy – everyone has their own crosses to bear and how you meet that is what makes you who you are. I’m not asking for money either (though I will point you in the right direction if you feel that way inclined). What I am trying to do is raise awareness for a rare disease because many people are often mis-diagnosed. I just heard of a man today who was being treated as a stroke patient when he is actually displaying classic PSP symptoms.
My objective here is simple. The PSP Association have an annual Awareness week which starts on April 5th. They are encouraging their supporters to have an “Afternoon Tea for PSP” to help raise national awareness and publicise the work of the organisation. We are having our 8th Birthday celebration open days at Graphicus on April 4th and 5th, so we are holding our very own Afternoon Tea Party to help to raise awareness and funds in a fun crafting way. (There’ll be cake too!)
Between now and April 5th, I want to get as many comments on this blog entry as I can. On April 5th, if I have over 100 people’s comments, I will make the above paper a free download for everyone and I will also pick ten names at random to receive the brand new CD that this paper will feature on.
So please leave a comment (have you heard of PSP?). If you are a regular reader and don’t normally comment, now is your chance. You can use the little envelope symbol at the bottom of this blog entry to email the link to this page to your friends and encourage them to come and leave a comment too.
We feel very fortunate that Alma’s condition was recognised early and though there is no cure, she was given treatment which may be why she is one of the longest surviving PSP patients in the country. If you work in the medical profession, or know someone who does, you could be that person who makes all the difference.
We would love to see you at our open days, but if that’s not possible, then I would encourage you to spend some quality time on April 5th sharing a cup of tea with someone you love.
More information is available from www.pspeur.org.
The PSP Association is a Company limited by Guarantee. Registered in England. Registered number: 2920581. Registered Office: United Scientific House, 215 Vauxhall Bridge Road, London SW1V 1EJ.
Registered Charity number:1037087