Parkinson's Awareness Week - what a week!

Last week was Parkinson's Awareness Week and what a week it was. On Monday, we recorded the highest-ever number of visits in a day to our website. And our helpline 0808 800 0303 had its busiest day yet - we received more calls in a morning than we did in the whole of last year's Parkinson's Awareness Week.

Study this

Map of Tracking Parkinson's centres
Map of Tracking Parkinson's centres
The week kicked off with the launch of the biggest ever in-depth research study into Parkinson's. Our Tracking Parkinson's study will be led by Dr Donald Grosset at the University of Glasgow.

We need 3,000 volunteers who have been diagnosed with Parkinson's in the past 3 years, or diagnosed before the age of 50 - and a small number of their brothers and sisters - to take part.

Our chief executive Steve Ford told BBC Radio's the Today programme: "The study will create a detailed picture of the development of the condition".

He added: "We want to take blood and DNA samples, catalogue all the information and make it available to the worldwide research community. We feel that this level of information will help us to identify a test for Parkinson's."

More than 1,200 people have registered their interest in taking part through our online form - a great response - and the number's going up all the time. If you think you might be eligible and want to take part let us know.

And so far we've had nearly 600 pieces of media coverage for Parkinson's Awareness Week - including widespread coverage on the BBC, national newspapers, lifestyle magazines and plenty of local, regional and national TV and radio. And the news coverage keeps growing.

Raise it up

Stroll Stormont, one of our fundraising events in Northern Ireland
Our Stroll Stormont event in Northern Ireland
We want to say a huge thank you to everyone who was involved in fundraising activities for Parkinson's Awareness Week.

Some of you ran the Brighton and Paris marathons, while others pounded the pavements or fields in events including the Quayside Walk in Newcastle, Stroll Stormont in Belfast and Colne Valley Walk in Buckinghamshire. A plucky 28 skydived out of a plane at 10,000 feet.

Our supporters in Yorkshire and Humber had fun fundraising with Noodle, our brain cell toy (we have some great photos of Noodle on his travels). And there have been research lectures, coffee mornings, collections, information days, and more - over 200 events in total.

One of our supporters in Wales even made their own life-size Noodle costume to wear at a sponsored walk.

On Sunday, the week ended with 215 people running the Virgin London Marathon for us - we even had someone running for us dressed as a daffodil and another runner dressed as a giant baby.

Every one of you has made an amazing effort to change life for people affected by Parkinson's. Your actions have helped raise awareness, and funds that will help us work towards finding a cure.

Niki Taylor, who ran the Brighton marathon for us, says: "My father had Parkinson's. He passed away in February so this challenge has meant so much and I know he would have been so proud."

See our Parkinson's Awareness Week photos on Flickr

What would a cure mean to you?

What would a cure mean to you? - Linda's story
What a cure would mean to Linda
 Also last week, we launched a special website for people affected by Parkinson's - as well as healthcare professionals, researchers and our supporters - to tell us what a cure would mean to you.

Many of you have moved us with your thoughts (240 so far and counting). We can't thank you enough for sharing them with everyone.

Susan says: "A cure would mean not crying when I see my husband struggling to cope with everyday life." While David says: "It would be like being released from a mental prison."

Kevin says a cure would be "like winning the lottery", and for Beth it would mean "that my 90-year-old grandma stops being a full-time carer".

There are so many more we could have quoted and they all show just how urgent it is to find a cure for Parkinson's. You can read them and upload your own story at

Our celebrity supporters have their say

Our celebrity supporters were busy updating their thoughts too. Our president Jane Asher said: "I would be only too thrilled if a cure was found because my brother-in-law has Parkinson's. And to watch him slowly getting worse, his life being curtailed bit by bit over the years, is deeply heartbreaking."

BBC newsreader Jane Hill said: "A cure for Parkinson's would mean that my dad would not have had to live with 10 years of restricted movement and of medication. And it would have meant an enormous amount to my mum, who cared for him for many, many years."

Comedian Graham Norton urged: "New breakthroughs in research are sorely needed, so please do what you can to help Parkinson's UK fund their vital work."

See messages from other celebrity supporters

Politicians give their support

Many politicians have lent their support to the launch of the Tracking Parkinson's study.

Ian Davidson MP for Glasgow South West says: "If you know of anyone who is suitable [for the study] please ask them to sign up. They could help find a cure for Parkinson's that would improve the lives of hundreds of thousands of people all over the UK."

Lesley Griffiths, Minister for Health and Social Services for Wales and Assembly Member for Wrexham says: "Tracking Parkinson's could make an important contribution in helping us find ways to cure Parkinson's and I am pleased that 2 centres in Wales are taking part."

Northern Ireland's Chief Medical Officer Dr Michael McBride paid tribute to the difference Parkinson's UK makes to people with Parkinson's and backed the study. He said: "This study presents an opportunity to garner information that may help researchers develop treatment to alleviate symptoms associated with the disease."

This was echoed by Steve Brine MP for Winchester and Chandler's Ford who said: "I know how vital it is for volunteers to come forward and join in."

Others took to Twitter to show support , including Conor Burns MP for Bournemouth West, Alderney and Branksome East, Caroline Dinenage, MP for Gosport and Sandy Mewies, Welsh Assembly Member for Delyn.

Getting social

Rob and Chris, 2 of our amazing London Marathon runners
2 of our fantastic London Marathon runners
Talking of tweets, TV foodies the Hairy Bikers and BBC 6 Music DJ and Fun Lovin' Criminal Huey Morgan supported Parkinson's Awareness Week by retweeting messages to their followers.

And they're not the only ones who spread the word about us on social media. Lots of people have been sharing our messages and posting their own using our hashtag #parkinsonscure

Messages of support include this one on Twitter: "The study looks amazing, i will try and get my dad involved he still is coming to terms with having it and its been 8 years… We WILL find a cure."

And another from Facebook: "I've seen details of this now in the times, BBC and Radio 5 live! Amazing work by Parkinson's UK to raise awareness of the cause. I'm so proud to support this charity and of all the work you do."

More than 340 'Find a cure' twibbons or Facebook badges have been added by people. You can still add one to show your support.

We also had tweets of support from lifestyle magazines Savista and Enable. Some Tracking Parkinson's centres have tweeted about their involvement in the study too, as well as hundreds of other people on Facebook and Twitter posting messages of support.

What did you do in Parkinson's Awareness Week to help us find a cure?

No comments:

Post a Comment

Note: only a member of this blog may post a comment.