Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Illuminate Parkinson’s

4 Comments

Here’s a great project that one of my friends pointed out to me yesterday:

Illuminate Parkinson’s is a photographic project that will consist of a travelling exhibition (initially proposed shows are in Los Angeles, Edinburgh and Berlin) and a book. There are a number of celebrities – mainly from the slightly alternative world of grown-up comics (Neil Gaiman, Terry Gilliam, Grant Morrison, Kevin Smith – oh, and Stephen Fry) – involved, and, of course, one seriously good portrait photographer, Allan Amato. But the core portraits will be of people with Parkinson’s.

Allan has been inspired to do this by his best friend, Becky, who discovered that she had Parkinson’s at the age of 29.

Now all they need is the capital to get the project rolling… which is where Kickstarter comes in. Kickstarter allows people to float the idea of creative projects out to the world at large (in the form of the Internet). There’s a stated cash requirement, a deadline by which the project owners must collect pledges to meet that cash requirement, and supporters. Supporters are the multitude, who can pledge to pay as much towards the project as they wish. There’s also incentives, which basically means stuff the project owners will give the supporters when the project is complete.

You’ll find Illuminate Parkinson’s on Kickstarter here. I reckon it’s worth a few bob just to see this project get underway.

Here’s a few of the celebrity supporter images:

Illuminate Parkinson’s is linked to the Illuminate ‘brand’, created to assist in raising funds for The Cure Parkinson’s Trust. Both of these are UK organisations, although, of course, any benefit that their work brings will be to Parkinson’s sufferers worldwide.

The purpose of Illuminate is to raise not only the funds to find a cure for Parkinson’s Disease but also to educate and inform young people about its effect thus “Helping to throw light on Parkinson’s”

Advertisements

4 thoughts on “Illuminate Parkinson’s

  1. The message for me is the stark contrast from the normal face to the frozen face, that is so often a characteristic of PD.

    I’m not sure that is in the book, going by the cover?

    Is this why Ray Kennedy disappeared? Ali has not. MJF has not?

    • I had to look Ray Kennedy up. He’s the footballer?
      Muhammed Ali and Michael J. Fox are still in the public eye, probably because they want to be. I think they were both more famous than Kennedy (I know not; I don’t follow sport) in the first place. Ali has to be one of the most famous boxers ever. I think I could only give you two boxer’s names – his and Tyson’s. MJF has, I think, built upon his career (which was not excessively spectacular, despite two or three cult kids movies) and, basically MADE A LOT OF NOISE! He was also very young (age 30) when he was diagnosed, whiich might have meant that he was angrier, more full of energy, and more inclined to try to do something about it. His charitable foundation is, as I’m sure you know, a significant player in world research into Parkinson’s.

  2. I think that fact of “the stark contrast from the normal face to the frozen face” may be part of the appeal for the Parkinsonian subject of photography. In the photograph, they are still: no tremors. A photograph does not distinguish between freezing due to PD and the freezing in time due to closure of the shutter. A still photograph emphasises the humanity of the subject, not his or her medical condition.

    There is a man who, shortly after being diagnosed with PD in his 50s, “left his job as a solicitor and turned himself into an art project” by offering himself as a subject to multiple photographers. His name is Tim Andrews. I came across him in this article in The Guardian (UK newspaper).

    The “Illuminate Parkinson’s” photography project is intended as an awareness tool. I can see how it might work – a series of photographs, people who could be me, you, the girl next door; can you tell if they have Parkinson’s? No. Can you tell that I have Parkinson’s if you met me? Most of the time, no. (Well, you might, if you knew what to look for and if my left arm was doing its funny tensing thing, which it does pretty much all the time – but most people wouldn’t.) It’s an attempt to bring the idea of the condition, the possibility of it striking at (almost) any age, home to younger people who may not have come across it (and, I imagine, it’s an attempt to elict pity for the subjects and funds for the charity).

    When I was first diagnosed, I didn’t know anyone with Parkinson’s, of any age. I’ve since told most of my friends and some of my acquaintances; I’m a one woman walking awareness campaign. But I haven’t got the clout of a Terry Gilliam or a Neil Gaiman. And, in person, I’m quite shy, so I’m not very good at spreading the words widely that way.

  3. I popped in to the Illuminate Parkinson’s page on Kickstarter today and was very pleased to see that the project has acheived its target. I’m sure they’d appreciate a bit more than the $30 buffer they have at the moment, mind, so if anyone reading this is feeling generous – or would like a share of the incentives – the link is:
    http://www.kickstarter.com/projects/1193179890/illuminate-parkinsons

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s