Highlights of 2010 - our first year as Parkinson's UK

What a year 2010 has been – especially with the launch of our 6 goals for 2010-2014, as well as our transformation to Parkinson's UK in April.

We've had a great response to our new vision and identity. Many more people have engaged with us as a result. This is just one way we're striving to achieve our 1st goal: no one has to face Parkinson's alone.

Image right: TV presenter John Stapleton, one of our celebrity supporters

Our 2nd goal is: we will listen and respond to the needs of everyone affected by Parkinson's.

This year our helpline 0808 800 0303 has been awarded the Helplines Association's accreditation.

And we've achieved the Department of Health's Information Standard for our publications and resources. Both these awards are an important part of our work to make our information and advice accessible for everyone.

2010 also saw Parkinson's UK play a key role in some major projects, which have helped us to continue to achieve the 3rd of our goals: we will improve life for everyone affected by Parkinson's.

We were a major partner in the hugely successful second World Parkinson Congress in Glasgow.

Researchers, healthcare professionals and people affected by Parkinson's came together for 3 days to create a global movement for change for people with Parkinson's.

Image: Bob Taylor, one of our members, playing on the Nintendo Wii at the World Parkinson Congress

The congress, the launch of our research strategy and our successful York research conference demonstrated our leadership in the research community. These highlighted our work towards our 4th goal: our research will have resulted in better treatments and progress towards a cure. Read more about 2010 Parkinson's research achievements - celebrating an exciting year in Parkinson's research.

This year also marked the start of research into the benefits of the Nintendo Wii for people with Parkinson's. Oscar-winning actress and face of the Wii, Helen Mirren, spoke to The Guardian and ITV's Daybreak about her support for our Fair Care for Parkinson's campaign.

And Karen Rose, a member of our Bristol Branch, starred in Nintendo's TV adverts talking about how using the Wii helps her manage her Parkinson's.

2010 has also been our best ever year for fundraising, thanks to all of our dedicated supporters. This is a big step towards us reaching our fundraising target of £110million by 2014: goal 5.

Image right: Our Bexley and Dartford Branch manning their information and fundraising stand

These are just a few successes from 2010, all of which contribute to helping us achieve our 6th goal: to be a united, focused and effective organisation.

None of this would be possible without the hard work of our dedicated supporters, volunteers and staff.

What were your highlights from 2010? Tell us your goals for 2011 – what do you want to achieve next year?

We wish you a very merry Christmas and a happy new year.

New cuts could jeopardise UK Parkinson's research

Back in September we joined the Science is Vital campaign against proposed cuts of 40% to UK science funding in the Government's autumn spending review.

And in October we were relieved to hear that science had escaped the worst of the budget cuts - with Vince Cable promising to ring-fence £4.6billion for science over the next 4 years.

But this week science funding bodies have learned that they will have to absorb devastating cuts of 41% to their capital expenditure.

'Capital expenditure' is money spent on essentials like building, maintenance and equipment. So slashing investment by 41% will put major pressure on UK science funders and the money will probably have to come from scientific grant budgets.

We're aiming to continue to increase our Parkinson's research spending year on year. But, like all charities, we rely heavily upon a backbone of government investment in research. Their funding supports UK universities and organisations like DeNDRoN that provide essential resources to the research community.

These new cuts could seriously jeopardise the momentum we've been building for the last 40 years and have a devastating impact on medical research in the UK for years to come.

Speeding up the search for a Parkinson's cure

We were one of the research charities at the 'Partnering for Cures' conference in New York earlier this week. One key question needed to be answered - how can the international research community break down barriers, learn to trust, and share information across different areas of research?

A priority for us at Parkinson's UK is finding out why nerve cells die to enable us to identify and develop new drugs. This is where collaboration gets exciting.

We know that some of the changes that occur in nerve cells affected by Parkinson's also occur in other conditions. And one of the researchers we fund in the UK, Professor Dario Alessi from Dundee, also has expertise in developing drugs to treat cancer.

Dario wants to use this expertise to develop new Parkinson's drugs. Some may already have been screened for other conditions. We're also developing animal models of Parkinson's, so we can work together with industry to screen potential new drugs that they may already have sitting on their shelves.

Sharing information is crucial. Many clinical trials for Parkinson's have taken place in the last few years, and the data for each is stored separately. Why not pool together everything we know so we can really understand why Parkinson's develops? And we can help to co-ordinate the sharing of information.

The message we've taken away from this week's meeting is that our Parkinson's UK research can really make a difference, combined with the powerful voice of our members promoting research, and our willingness to work together internationally.

After all, we are all working together for a common goal - to speed up the search for a cure for Parkinson's.

Leaving the comfort zone in 2011

As the year draws to a close, many of us will be thinking about what personal challenges to set ourselves for 2011.

We all know that eating a healthy diet and exercising regularly can help us keep in shape and improve our sense of wellbeing. Taking that first step which takes us out of our comfort zone can be the hardest part.

30 of our supporters returned this week from Trek Nepal. Amongst the trekkers was Roddy Lee (pictured on the left of this photo, with fellow trekker Chris).

Having Parkinson's for 3 years hasn't stopped Roddy from testing his abilities to the full.

Here are some extracts from Roddy's trek diary:

"I remember promising to myself and my family, following my own diagnosis, that for as long as I am able I shall do all I can to raise funds for research into the causes of, and cures for, Parkinson's...

"A positive approach to managing my Parkinson's, with a healthy exercise regime and setting of achievable goals, helps me come to terms with the condition...

"Strange as though it may sound, Parkinson's has opened up new boundaries to me. It has afforded me new and challenging opportunities and as I pull off my boots at the end of each gruelling day I thank God and all around me that I am still able to lead as full a life as I do."

If you've been inspired by Roddy's story, why not sign up for a Parkinson's UK challenge next year and get your own adrenalin flowing?

You can:

Visit our Events page to find out more about other types of events you can take part in.

Time to take that first step?

A choice between freedom or 4 walls?

We think that maintaining an independent life doesn't end when a person enters residential care.

The Government has recently proposed that the Disability Living Allowance (DLA) mobility component be removed from those in publicly funded residential care. This will leave many without the opportunity to do things like lease specially adapted vehicles from the Motability Scheme, or pay for accessible transport to get out in their community.

The Government says that the funding provided by local authorities for someone's care duplicates the funding provided by the Disability Living Allowance (DLA). But limited arrangements made by care homes or local authorities are no substitution to the freedom offered by mobility DLA.

Against a background of savage cuts to local authority budgets, it's highly unlikely that councils will step in with new funding for accessible transport. So these changes could mean that many people will be left restricted to live their lives within 4 walls.

We recently wrote to Maria Miller, Minister for Disabled People (PDF file) to object to the Government's plan, set out in October's Comprehensive Spending Review.

If you think that you might be affected by these changes, you can take action. Please write to your local MP about the issue, and ask them to urgently take the matter up with the Minister for Disabled People.

You can also encourage your MP to sign the Early Day Motion 1000 to protest about the changes.

Post your comments here or email our Campaigns team at campaigns@parkinsons.org.uk

What would we do without foreign scientists?

This week we announced that Parkinson's UK-funded researchers are paving the way for potential new treatments for dyskinesia, one of the most distressing side effects of Parkinson's medication.

This research at Cardiff University is being led by Professor Riccardo Brambilla, who divides his time between research institutions in Wales and Italy.

It is only by researchers outside of the UK collaborating and sharing their expertise that Parkinson's research can flourish and move forward - and the UK can continue to be a world leader.

There have been fears that skilled migrant workers including talented foreign scientists would be deterred from working in the UK due to proposed immigration caps.

Home Secretary Theresa May this week outlined plans for strictly controlled immigration quotas for those with 'exceptional talent', including scientists and other professionals from outside the European Union. 1,000 individuals will be allowed in.

The exception for scientists is indeed good news. Charities like us, as well as universities and many businesses have lobbied hard in the run up to this announcement to make the case that top class researchers must be exempt from any caps.

How exceptional talent will be defined by the Government remains to be seen. Every Parkinson's researcher entering the UK potentially holds the key to finding a cure for Parkinson's. There should be no cap on creative and enquiring minds.

If you have a passion for research, post your comments below. To find out more about our plan to find a cure for Parkinson's, read our innovative 5-year research strategy.

Fairer social care?

Yesterday, the Government set out its vision on social care, stating that everyone eligible for social care should have access to their own personal budget by April 2013. Personal budgets can offer much more choice for people in accessing support and care services they want.

The Government also wants to see more integration with health, local information and advice, and a role for the voluntary sector in helping shape local services.

We think that these all seem like worthy ambitions, especially the promise that carers will see more money from the NHS to fund respite breaks

But many remember the last time that the NHS was given money for carers breaks and very little of that money found its way to the intended recipients

And that's the crux of the problem. Whatever national government sets out - in terms of vision or money, it's local delivery that really matters.

When it comes to social care, there's a postcode lottery in the variable quality of services - from who is eligible, to how much they are charged and major concerns about funding.

People with Parkinson's tell us they want a fairer system that provides quality care, wherever they live. If today’s vision delivers on this, then it will be worth the paper it’s written on.

What do you think of the announcement? Post your thoughts here or email campaigns@parkinsons.org.uk

Our response to the Welfare Reform White paper

Yesterday, the coalition Government published its White Paper on Welfare Reform, which included further proposals to change the benefits system.

Iain Duncan-Smith spoke at length about getting more people back into work, rather than remaining on benefits. His aim is to simplify the benefits system through the introduction of a Universal Credit

While this simplification of the benefits system is a positive step forward we need clarification around the disability supplement for Jobseeker's Allowance and the proposed taper.

The Government needs to clarify how these disabled people will be identified to avoid duplication of the problems that have arisen when assessing people for other benefits such as Employment and Support Allowance

We need a much more robust assessment method that takes into account the nature of fluctuating conditions like Parkinson's.

How do the announcements in the recent White Paper affect you? What are your concerns for the future?

Tell us your stories by emailing campaigns@parkinsons.org.uk

Day 2 and all the latest from York

Our third and final keynote speaker, Dr Mark Cookson from the National Institute of Ageing, discussed what we've learnt from looking at the genetics of Parkinson's.

Over the past 10 years, researchers have found changes in a number of different genes that affect the risk of a person developing Parkinson's. Mark described his research which focuses on unravelling how these subtle gene changes cause problems inside the nerve cells that die in Parkinson's.

Next, we heard from Nazir Rampersaud who presented his exciting research into exendin-4 (a drug currently used to treat diabetes) which helps rats with early stage Parkinson's to recover.

And Parkinson's UK research fellow Patrick Lewis described how his research is investigating how changes in the LRRK2 gene cause Parkinson's.

In the final session we heard from researchers on physiotherapy, potential new treatments for uncontrollable movements (dyskinesias), and the long-term effects of taking levodopa.

Our Director of Research, Dr Kieran Breen, sums up:

"Our mission is to inspire, nurture and develop the next generation of Parkinson's researchers. It was fantastic to see so many talented and enthusiastic scientists here in York, and to know that Parkinson's research in this country is in safe hands".

Listen to Kieran's interview with BBC Radio York that was broadcast yesterday.

Parkinson's UK research conference - news on day 1

Today, we welcomed 195 researchers from around the UK to share ideas, discuss challenges and work together towards a cure for Parkinson's.

Our first keynote speaker, Dr Deniz Kirik from Lund University in Sweden. Deniz discussed our progress towards a new generation of treatments that aim to slow the development of Parkinson's and repair the brain.

He said that Parkinson's research is really leading the way in gene therapy and cell transplants. And there are currently several trials underway of gene therapies for Parkinson's that are looking promising.

Next we heard from a string of Parkinson's UK-funded researchers:

After lunch we heard from our second keynote speaker Dr Valerie Voon from the University of Cambridge.

Valerie said that compulsive behaviours affect up to 13% of people with Parkinson's, and these problems may stem from changes in dopamine release inside the brain.

Our Director of Research, Dr Kieran Breen, was interviewed by BBC Radio York, and we'll report on that tomorrow. It's been an exciting and stimulating first day.

Commissioning better care for people with Parkinson's

The way services for health and social care services are commissioned will be transformed in the next few years, with GPs taking on this responsibility.

We want the professionals who are commissioning services now, and in the future, to make the best possible decisions for people with Parkinson's, and other long-term neurological conditions, so that they and their families have the best possible care.

This week saw the launch of a new tool for those responsible for commissioning health and social care services. It helps them understand the needs of people with long-term neurological conditions – specifically Parkinson's, multiple sclerosis and motor neurone disease.

Neuronavigator offers commissioners support and information on how best to commission services for long-term neurological conditions, including support on costings for these services.

It's part of Neurological Commissioning Support (NCS), which is a joint initiative between us, the MS Society and the MND Association. We work alongside PCTs and local authorities to ensure people living with long-term conditions have access to the services and support they need.

Tell us your experiences of Parkinson's care? What do you think the priorities for commissioners looking at long-term neurological conditions should be?

Add your comments below or email us on campaigns@parkinsons.org.uk

Comprehensive Spending Review - your views

Tomorrow at 12.30pm the Chancellor, George Osbourne, will announce the results of the Government's Comprehensive Spending Review.

With public finances in a poor state, the spending review will outline details of which government departments will need to cut their spending and by how much.

We have real concerns on how government cuts might impact on people with Parkinson's and the level of care and support they receive. Access to benefits, NHS spending and research funding are among the top priorities of things we feel passionately about and want to see protected wherever possible.

If you're affected by Parkinson's, which areas of government spending do you most want to see protected? Are you concerned about what spending cuts might mean to your local Parkinson's services and support?

Discuss your views and concerns here this week as details of the review are outlined.

If you want to find our more about the Comprehensive Spending Review and what it means to people with Parkinson's, email campaigns@parkinsons.org.uk

Update 20 October 2010

You can now read our response to the Chancellor's spending announcements and what they could mean for people affected by Parkinson's.

What did you think of today's announcements? How will they impact you? Share your concerns and views below.

Keep on running

This week's extraordinary rescue mission of the trapped miners in Chile has captured the world's imagination and left everyone feeling very inspired.

It's hard to imagine just how difficult it must have been for the 33 miners stranded half a mile underground. The images of the survivors surfacing to an emotional reunion with loved ones after 70 days being trapped, goes to show the incredible lengths that the human spirit will endure in the face of adversity.

Amongst the survivors was Edison Pena, who earned himself the nickname 'the runner'. According to reports, Edison coped with the ordeal by running up to 10km every day up and down the mines.

Running is proven to lift the mood, help the mind to focus and give people a sense of purpose and achievement. So it's no surprise that Edison found solace in running to get him through such testing conditions.

A real inspiration. And talking of running in the dark…

If you're feeling spurred on by Edison's efforts, why not consider signing up to the Parkinson's 10K Spooky Sprint?

Taking place on 30 October, at the National Water Sports Centre, Nottingham, the Halloween-themed run will take place in the evening (all runners will be provide with a free head torch!).

All money raised will support our vital work and help improve life for everyone affected by Parkinson's. Get in touch with our Events team at events@parkinsons.org.uk for more information on how to get involved. Or you can register online.

Our plan to find a cure for Parkinson's

Last week, the global Parkinson's community gathered in Glasgow for the World Parkinson Congress (WPC). All our staff, members and supporters who attended returned home feeling more motivated than ever towards finding a cure and improving life for everyone with Parkinson's.

Paul Jackson Clark, our Director of Fundraising, said: "It was a really inspiring week and as an organisation we received lots of positive feedback from people from across the world.

"But I thought that the most inspirational speakers were the people with Parkinson's. They were able to say more in a couple of minutes about what it's really like to live with Parkinson's and the urgent need for our work, than most scientists did in an hour."

One of our members said: "We felt so comforted by the whole community and the amount of work being done to find a cure. It was incredibly inspiring."

Another of our members, who has Parkinson's, commented on our Facebook page: "I feel re-energised and more positive than ever regarding a cure for us all. Please let's not lose the impetus. Lets all band together as one voice. We are never alone. One day, we might say: 'I used to have Parkinson's'."

We also took the opportunity last week to launch our ambitious new research strategy at the WPC. We hope that the strategy will push our search for a cure for Parkinson's to a new level. Watch our video featuring people with Parkinson's, researchers and clinicians talking about why a Parkinson's cure can't wait.

If you were at the World Parkinson Congress, we'd love to hear your feedback. Even if you weren't in Glasgow, we’d like to hear your thoughts on the congress and our exciting new research strategy.

And if you haven't signed the global Parkinson's pledge yet, it only takes a few seconds and will help us create a global movement towards finding a cure for Parkinson's.

World Parkinson Congress: Day Three

Today, the final day of the World Parkinson Congress continued to provide more fascinating workshops and speakers to report on. Amongst today’s highlights:

This morning Parkinson’s UK funded researcher, Roger Barker spoke about gene and cell-based therapies for Parkinson’s patients. He discussed the need to study design challenges and new possibilities, and spoke of his his current transplant trial.

Fellow Parkinson’s UK funded researcher Lyn Rochester also delivered an interesting speech on the benefits of physical therapy for people with Parkinson’s. There was a lot of discussion on the need for longer and larger studies into the benefits of physiotherapy.

Later on, Kieran Breen, our Director of Research and Development chaired a session on gene and cellular therapy. He suggested that tissue transplants may help us design stem cell clinical trials in the future.

We hope that everyone involved, both in Glasgow and those following via this blog and Twitter, has enjoyed the week and learnt something new about Parkinson’s. There’s been a real sense of coming together of people from across the globe, united in our efforts to learn more about Parkinson’s and move towards a cure for the condition.

Our Chief Executive, Steve Ford, sums up:

“Our objectives were to ensure that lots of people affected by Parkinson’s attended and shaped the congress and that Parkinson's UK had a high profile. We succeeded in both.

“It’s great to have developed our international relationships – this week, Parkinson’s UK established itself at the heart of the global Parkinson’s movement.

“Now we’ve reached the end of the week, we’re all feeling a little bit exhausted. But we’re really keen to capture everyone’s thoughts and observations so that we can ensure that this year’s WPC has an ongoing legacy. Whether you attended up here in Glasgow or not, we’d love to hear from you.”

World Parkinson Congress: Exercise, laughter and more powerful stories

Another busy but enlightening day here in Glasgow.

In today’s early morning session, Professor Bastiaan Bloom spoke about why he feels patients are crucial in managing response fluctuations with Parkinson’s and looked to how technology will have an increased role in the future. He said: “I think in the future, patients will be wearing sensors – perhaps on a wristwatch – recording whether patients are on or off and predicting if they might have excessive movements or dyskinesias in 10 years time.”

Later on, Liz Wolstenholme, one of our trustees talked movingly about taking charge of Parkinson’s in her session this afternoon. She urged delegates to realise how empowering the act of sharing each other’s stories and experiences can be in dealing with Parkinson’s.

We were also at a workshop on exercise and Parkinson’s led by researcher, Giselle Petzinger. Giselle discussed her innovative research that explores how exercise can change the way the Parkinson’s brain works. Her work strongly suggests that exercise training helps the brain to use dopamine (the chemical lost in Parkinson’s) much more efficiently. Fascinating stuff.

Ex-pro cyclist and person with Parkinson’s, Davis Phinney spoke passionately about the power of exercise to improve quality of life for people with the condition. He said: “'I could sit around and wait for a cure, but waiting is so passive, exercising means I can improve my life right now."

Speaking of exercise, as you can see from the picture, above, our Nintendo Wii stand continues to draw in crowds eager to have a go and let out their competitive streak! And a lot of fun was had by everyone who attended Bob Taylor’s fantastic laughter workshop.

Check out the Parkinson's UK Twitter feed to keep up to date with more action from the WPC.

World Parkinson Congress: Genetics and Parkinson's

It was a packed schedule at the WPC yesterday.

Claire Bale from our Research team was in attendance at the fascinating Genetics: Inheritance, Risk Public Policy plenary session yesterday morning. Dr Gasser said that studying the genes we’ve found so far is revealing vital insights into what goes wrong with Parkinson’s – and can offer new clues for developing treatments.

Dr Christine Klein also discussed how understanding the part that our genes play in Parkinson’s has led to interesting possibilities for genetic testing.

Perhaps the most moving presentation came from David Iverson, a US broadcaster and journalist who discussed his family’s journey with Parkinson’s. His father had Parkinson’s - but now both he and his brother have also been diagnosed with the condition. David and his brother have children, so they discussed the idea of genetic testing together – but ultimately, chose not to have the tests.

Matt Farrer, a Canadian genetics expert said: “Genetics for Parkinson’s is moving forward at an incredible pace.”

Katherine Crawford, our Scotland Manager, was at the genetics session. She said: “It was really thought-provoking morning. The thing that really came across from John Iverson’s presentation was: Parkinson’s is progressive. But so is science.”

Jean and Mel Ballantyne, from the Parkinson’s UK Fife Branch, enjoyed having the chance to meet researchers face to face. Mel said: “The future looks exciting and you can definitely feel that enthusiasm amongst people here."

WPC Day 1: The road must start here

Last night, the World Parkinson Congress 2010 officially opened in impressive fashion.

Ex-Scotland Rugby captain Gavin Hastings spoke movingly to delegates about his wife's Parkinson's and his commitment to supporting the global Parkinson's community. His story was also in the news this morning, including in the Scottish Sun and the Daily Express

Bryn Williams, a local person who has Parkinson's, was greeted with a heartfelt standing ovation in response to a truly inspiring speech

Right: Gavin Hastings signs the Parkinson's pledge. Left to right are: Diane Hastings, Steve Ford and Bryn Williams.

Among today's highlights, our Chief Executive Steve Ford chaired a workshop on approaches for getting government research funding. And our Director of Research and Development, Kieran Breen, spoke to delegates about our Parkinson's Brain Bank and successful Brain Donor Appeal.

For delegates in need of light relief, one of our members, Bob Taylor, ran an innovative laughter workshop for people with Parkinson's and our Nintendo Wii bowling competition really got into full swing.

Check out our pictures from what’s been a busy first day at the congress, including Gavin Hastings signing the global Parkinson's pledge.

So there's been a real sense of hope, aspiration and positivity running through the congress during Day 1. It's already shaping up to be quite a memorable week. The words of Bryn Williams perhaps best sum up the mood here in Glasgow. Long may it continue.

"If the delegates whose life's work is Parkinson's, collaborate with those who live with Parkinson's, together we can deliver a future without Parkinson's.

"But the road must start here. The opportunity exists this week. In this city. At this congress…

"Welcome to Scotland. Welcome to Glasgow. Welcome to the World Parkinson Congress."

World Parkinson Congress - gearing up for opening ceremony

It's been a day of excitement and anticipation in Glasgow today! Delegates and organisations from across the world have arrived in their masses ahead of the opening ceremony of the 2nd World Parkinson Congress (WPC) this evening.

Ahead of the 'official' Day 1 of the congress tomorrow, we've been busy meeting other delegates and taking in some of the interesting pre-congress courses going on throughout the day.

Our chief executive Steve Ford attended the 'Fundamentals of PD' course earlier today. Steve said: "I saw some really amazing presentations today. The difference that having access to a team of specialist therapists makes for people with Parkinson's really came across and made a big impact."

One of our members, Richard Tyner, also went to the session. He said "I was fascinated to learn that by the time people are diagnosed with Parkinson's they may already be coping with up to 10 different non-motor symptoms associated with the condition."

During the opening ceremony, which starts at 6.30pm tonight, BBC newsreader Jane Hill will announce the winners of the WPC 2010 video competition. Scotland Rugby Union legend Gavin Hastings will also be talking to delegates. It's geared up to be a really special evening and a perfect start to the congress.

If you live in the local area, watch out for Colleen Henderson-Heywood, who has Parkinson's, appearing on ITV Tyne Tees tonight (6pm) talking about the congress. Colleen and our chief executive Steve Ford will also both be on ITV Borders 6pm news tonight too.

Follow us here and on Twitter tomorrow for the latest news and views from Glasgow.

World Parkinson Congress starts today!

This week, for the first time ever, the UK will play host to the 2nd World Parkinson Congress (WPC) in Glasgow. The WPC is an international forum for anybody around the world affected by Parkinson's. The event will showcase the latest developments in Parkinson's research to find better treatments and ultimately, find a cure for Parkinson's.

We'll be in Glasgow throughout the week blogging on the WPC - keeping you up to date with daily highlights and news and views from delegates, including our own Parkinson's UK staff, members and supporters.

You may have also noticed our WPC Twitter widget on this page? So as well as this blog, readers will be able to keep stay on track with up to the minute developments in all things WPC from people attending the event from across the globe.

If you use Twitter be sure to use the hashtag #2010wpc in your tweets. You can also have your say by adding your comments below.

If you're attending, expect a packed programme of workshops and activities to get involved in, from discussions on the latest innovations in Parkinson's research, to laughter therapy and dance sessions for people with Parkinson's. There's even a Nintendo Wii bowling competition open to all delegates!

We hope that everyone involved in the World Parkinson Congress finds this week enjoyable and enlightening; whether you're in Glasgow, or keeping up to speed via this blog and Twitter.

We hope that this week will help unite the international Parkinson's community and help create a worldwide dialogue about the condition. It's an exciting step toward making Parkinson’s a health, social and economic priority around the world and working together to find a cure for Parkinson's. Join us!

Parkinson's UK going global

Next week, for the first time ever, the 2nd World Parkinson Congress (WPC) comes to the UK. Hosted in Glasgow, the WPC provides an international forum for the latest scientific discoveries and medical practices for people affected by Parkinson's.

One of the main aims of the congress is to create a global movement to help make Parkinson's a health, social and economic priority around the world.

We're always really keen to raise awareness of Parkinson's across the world and join with others to help us find a cure and improve life for everyone affected by the condition.

If you're not able to come to the congress, we'll be keeping you up to date through this blog, our website and on our Twitter and Facebook pages.

Also on a global theme, our passionate fundraisers continue to show their support by taking part in overseas challenges throughout the year. As this blog is being written, we have a group of 20 dedicated supporters on our Trek China, walking along the country's spectacular Great Wall to raise vital funds for Parkinson's UK.

And we have an exciting new line up of challenges for 2011, including Trek Kilimanjaro and Cycle Cuba.

If you've recently taken part in one of our overseas challenges, please share your experiences with us.

And if you'd like more information on taking part in one of our 2011 challenges, or you'd like to support us in other ways, get in touch with our Events team at events@parkinsons.org.uk

Parkinson's UK gets political: Invest to save

Over the next 3 weeks Parkinson's UK will be attending the Liberal Democrat, Labour and Conservative party conferences. The party conferences are where we can take part in policy debates at the highest level. We'll be telling MPs and decision-makers about the challenges faced by people with Parkinson's and how the Government can help deliver the care and support they need (PDF file).

At each of the conferences people with Parkinson's will be arguing that good quality care is also cost-effective. So with cuts looming, it makes sense to invest in the right services.

For example, a Parkinson's nurse in Northern Devon helped reduce hospital admissions by 66%. Replicated across England, this reduction could save the NHS £7.5m every year.

We will talk to politicians about how proposed changes to the NHS, social care, the welfare system and research funding affect people with Parkinson's. We will be campaigning for fair care, access to the right benefits and support for vital research.

One of the highlights of the party conference season will be next Tuesday 21 September. Care Services Minister Paul Burstow MP will address our event Smarter Spending for Better Care at the Liberal Democrat conference in Liverpool.

If you're going to any of the party conferences, you're welcome to join us at one of our events. Call our Campaigns team on 020 7963 9349 or email campaigns@parkinsons.org.uk.

Find out about all our party conference activities and take a look at our new publication Invest to Save (PDF file).

Government cuts could devastate UK research

Vince Cable has announced cuts to public spending for UK research, saying that "there is no justification for taxpayers' money being used to support research which is neither commercially useful nor theoretically outstanding".

We don't agree.

The 2008-2011 science budget (link to PDF) promised over £11billion for science, including £485million ring-fenced for vital ageing research. But with major cuts predicted, science funding could fall by up to £1billion. Vince Cable's claim that research is not of an excellent standard gives a false impression.

No one can predict where research will lead - but you can't cut corners. To make the breakthroughs, you have to allow scientists to widely explore their ideas with freedom and imagination.

Fierce funding competition means British science currently punches above its weight internationally. Pioneering UK research has already led to better treatments, improved care and hopes for a Parkinson's cure. All of these achievements were built on the solid foundations of strong public research funding.

And there is still much more work to do. Restricting research now will slow the momentum we've built over the last 40 years - seriously stifling the UK's reputation as a world leader of innovative research and forcing the best researchers abroad as a result.

We all have a vital role to play in supporting innovative research and encouraging a flourishing UK Parkinson's research community. We'll be talking to politicians about the big issues affecting people with Parkinson's at upcoming political party conferences.

Help us make an impact. If you're as passionate as we are about research funding or any other issues affecting people with Parkinson's, then ask your MP to meet us at the party conferences. Your voice can make a difference.

Petition for fair care - have you signed yet?

Over the last few weeks we’ve been calling for all people affected by Parkinson’s to sign our Fair Care for Parkinson’s petition

We’re using the petition to call on the Government and decision-makers to protect services and make sure people with Parkinson’s get quality care that meets national standards – wherever they live.

As part of our promotion of the petition, we’ve been sending out letters to the editors of newspapers across England asking their readers to support it. We’ve had a great response, with people getting in touch to ask for information and find out how to get involved.

It’s also been really interesting to hear about the different ways people have been campaigning on fair care issues in their local communities. Our letter in the Leicester Mercury this week expressed our disappointment at the decision by local health authorities to cut funding of a community neurology team.

Similarly, in other areas across England, people’s responses have been really encouraging. We’re really excited to see how it progresses between now and November, when we will present the petition to Government.

What are your experiences of local Parkinson’s services? Share your views here or email campaigns@parkinsons.org.uk

Have you signed our petition? It only takes a couple of minutes to add your name online - your voice can really make a difference.

New threat to US stem cell research

On Monday, a US court announced a ruling against President Obama's decision to permit government funding of embryonic stem cell research.

When President Obama agreed to lift the restrictions banning government-funded stem cell research in March last year, stem cell scientists were jubilant. The extra government funding would help scientists further understand how embryonic stem cells could be used to treat conditions like Parkinson's.

Obama's predecessor George W Bush was strongly against the use of embryonic stem cells on ethical grounds, and banned their use.

Parkinson's UK has always supported research using all types of stem cells. These cells have the unique ability to transform into many other types of cells - including those lost as Parkinson's develops. They are like a blank canvas on which we can draw many different types of painting. For these reasons, we think they hold great potential for the future of Parkinson's treatments.

However, we're not yet sure which type of stem cells are the most useful in the search for a cure for Parkinson's. So it's vital that stem cell research continues to be funded here and in the US.

We're really fortunate to live in a country that listens to scientists and encourages this type of innovative research.

You can read about Parkinson's UK-funded researcher Richard Wade-Martins and his work with iPS stem cells on our website.

Share your views on stem cell research, both in the UK and elsewhere, below or email research@parkinsons.org.uk

Majestic staff show support for Parkinson's UK

Back in January, Majestic Wine announced Parkinson's UK as its Charity of the Year 2010.

As part of our year-long partnership, 10 Majestic members of staff will be running in the Marathon Du Médoc on 11 September this year.

The race is one of France's most renowned marathons, set amongst the famous Bordeaux châteaux and vineyards. The team is collecting sponsorship money and they hope to raise as much as possible for Parkinson's UK.

So far, Majestic Wine has raised over £20,000 for us through collection tins, a raffle, donations from wine purchases and recycling mobile phones, amongst other fundraising activities. So we're really pleased to see their fundraising efforts continue throughout the year.

Our work is totally dependent on voluntary donations and corporate partnerships are an important source of income for us. They're also an essential way for us to plan ahead and ensure financial security, as well as growing long-lasting relationships that help us work towards our 5-year fundraising target of £110 million.

The income generated is crucial - but the opportunity to raise our public profile and awareness of Parkinson’s throughout the UK and beyond is invaluable.

Have you thought of applying for a local business Charity of the Year or partnership? If you're a member of one of our local groups, would you like advice on how to attract corporate interest in the charity in your community? Share your experiences here or email corporate@parkinsons.org.uk

Help us improve your website

If you're reading this, you are one of many thousands worldwide who visit Parkinson's UK on the web each week. And we want to know what you think.

We're asking everyone who uses any of our online services to fill in our short survey to tell us how we're doing and more importantly what you'd like to see in the future.

We want to hear from people with Parkinson's, carers, families, friends, health and social care professionals, researchers, Parkinson's UK staff, journalists - anyone who has ever accessed parkinsons.org.uk or visited us on social media websites.

It's now ten years since we launched our very first website. Starting out with just a handful of pages, the website today provides over 2000 pages of Parkinson's-related news and information and is home to an active and supportive community in our discussion forum

In the past year we have seen our online communities develop further through our Facebook page and on Twitter - as people affected by Parkinson's get together to share support and information in much the same way many of our members have done for years through local branches and support groups

We've trawled back through the archives to find some pictures of the website as it looked throughout the past decade - and though some of the images are a bit patchy it's interesting to look back at its colourful past and see how far we have come.


2004 2007

We know we still have a lot to do. Your responses will help shape the next version of our website and the range of information and services we provide online for people affected by Parkinson's.

The survey runs till 22 September 2010. We look forward to hearing what you think

New RCN website speaks out against service cuts

The Royal College of Nursing (RCN) has launched an innovative new website, Frontline First, allowing nursing staff to speak out against cuts to jobs and services, expose waste in the NHS and suggest new ideas and solutions.

Through anonymous user contributions, the Frontline First site has created an interactive map of nursing services in the UK and Northern Ireland – so that both professionals and service users can literally see how services are being affected in their area.

This week we contributed a blog for their site, showing our support for Frontline First. The campaign's passionate belief in the importance of specialist nurses and how patient care is affected when cuts are made is certainly something we share.

Essential services like specialist nurses, therapists and respite care save money and make a huge difference to quality of life for people with Parkinson's. It's a false economy to cut services that help people stay independent and keep them out of hospital and care homes.

If you're a Parkinson's nurse or nursing professional who works with people with Parkinson's, then we would encourage you to submit your evidence on the Frontline First website.

Are you a person affected by Parkinson's who is already starting to see changes to Parkinson's services in your area? Share your experiences below.

Everyone can take action by signing our Fair Care for Parkinson’s petition too.

If you’re app-y and you know it

When the iPhone first launched in 2007, it created a global sensation and triggered an explosion in the development of software applications that could work on smartphones - commonly known as 'apps'.

Now, 3 years on, it seems there's an app for just about everything – from growing your own fruit and veg, to reading the daily newspaper.

American blogger Karl Robb recently wrote about apps that can help people with Parkinson's, listing several that could assist with speech and sleep.

A browse of iTunes shows hundreds of apps available to provide health and fitness advice. There are also medication trackers, which remind you when to take medication and highlight any missed doses. It seems there really is an app for everything.

And it doesn't stop there. If you're interested in clinical trials, you can try the Parkinson's Drug Trials app. It claims to have the most up-to-date, comprehensive database of clinical trials. Searchable by location, it provides information on the purpose of the trial, eligibility and contact details, all available from your smartphone.

For professionals working with people with Parkinson's there are Parkinson's i-pocketcards providing essential information from diagnosis to treatments, as well as a huge range of apps for nurses, GPs and physiotherapists.

What apps would make your life easier? Have you used any apps to help you manage your condition or to help you treat a person with Parkinson's? Let us know.

And if you'd like to find out about research studies in the UK looking for people with Parkinson's to take part, visit our research pages or email research@parkinsons.org.uk

Encouraging the scientists of tomorrow

The newspapers seem to be full of news about the Government's potential cuts to services and funding.

And for medical research charities like Parkinson's UK, these can seem to be uncertain times to be investing in medical research.

This week we were at the House of Commons, together with other medical research charities, at the Medical Research All Party Parliamentary Group summer reception.

This was an opportunity to meet MPs and keep the work that charities like ours do in funding medical research high on the political agenda.

We were pleased to hear David Willetts, the Minister for Universities and Science, acknowledge the important role that medical charities play in the UK.

We also heard some interesting facts:
  • In 2009/10 alone, medical research charities contributed over £1billion worth of funding to medical and health research in the UK.

  • The UK is second only to The Netherlands in Europe, in the proportion of people giving to research.
To illustrate just how the UK is leading the way in research which could move us ever closer to a cure for Parkinson's, Dr Richard Wade-Martins spoke to the media this week about cutting edge technology - creating stem cells from a person's own skin cells.

Most of Dr Wade-Martins' team at Oxford University are under the age of 40. To encourage the young scientists of tomorrow, the Government must keep its promise to invest in medical research today.

What do you think? Add your comments below.

Google co-founder leading study to find new Parkinson’s genes

Google co-founder Sergey Brin is leading a new web-based study which he hopes will uncover vital changes in people's genes that affect their risk of getting Parkinson's.

In 2008, Brin discovered that he has a gene mutation known as LRRK2 which was discovered by Parkinson's UK-funded research in 2004. The tiny difference in his genetic code means that he is at increased risk of developing Parkinson's in later life.

Now he's joined forces with his wife Anne Wojcicki – who runs 'personalised genomics' company 23andMe - to gather DNA samples from 10,000 people with Parkinson's.

Participants fill in an internet survey about their symptoms and lifestyle and provide a sample of saliva containing their DNA.

This approach flips traditional research methods on their head. Usually researchers set out to answer a very specific set of questions - whereas Brin has little idea of exactly what he's looking for.

But by collecting huge amounts of information and using computers to search for patterns, he hopes to find new genes or lifestyle factors that influence the development of Parkinson's.

Is this a genuinely innovative approach to Parkinson's research? Or more gimmick than potential breakthrough? Tell us what you make of it all by leaving a comment below or emailing research@parkinsons.org.uk

All eyes on Health Minister at International Carers Conference

Health Minister Andrew Lansley is due to make his first major speech on social care today at the 5th International Carers Conference in Leeds.

While it's good news that the carers' debate has gone global, all eyes will be on his plans and what it means for carers closer to home.

We are expecting an announcement very soon that the work of the long term care commission will begin on social care funding reform.

Everyone agrees the system is creaking - yet cuts seem inevitable as councils try and balance their books.

On the day the Government challenges the public for ideas on how the state can make savings, we hope the Secretary of State remembers the amount that carers save the UK because of the support they offer - an estimated £87billion and rising.

If nothing else, this demonstrates that supporting carers makes financial sense.

You can watch Mr Lansley's speech live online today via Carers World Radio.

Tell us what you think of the speech. If you're a carer, we'd like to hear about your concerns over the new Government's plans for social care.

What does welfare system reform mean for Parkinson's?

This week, the Government made major proposals to reform the current welfare system.

The announcement, made by Employment Minister Chris Grayling, also established an independent review of the benefits assessments system, due to be completed by the end of 2010.

With reports in the media suggesting that this signals the start of a wider crackdown to reduce incapacity claimants, we're concerned about what this all means for people living with Parkinson's and other long-term conditions.

Although nothing will be decided until after the independent review reports back, it would seem that the Government is trying to 'float' the idea that cuts to the welfare budget and tougher assessment criteria could soon be in place.

What suggestions would you make to the Government's independent review, to make sure that people with Parkinson's are protected from future changes to the welfare system?

Have you recently been assessed for disability-related benefits or had any changes made to the level of support you receive?

If you want to find out more about the benefits available for people with Parkinson's and their carers we have a range of free publications.

Share your thoughts here or email campaigns@parkinsons.org.uk

Have you been tangoed?

Tango sessions could come with a string of benefits for people with Parkinson's, suggests new research presented at the 14th International Congress of Parkinson's Disease and Movement Disorders in Buenos Aires.

In the study, 10 people with Parkinson's had weekly 2-hour tango classes and practised at home using a DVD.

After just a month the researchers noticed improvements in posture and mobility, and the participants reported benefits to their mood and self esteem.

So, what's so special about tango? Researchers are interested because tango dancing involves a range of movements that may be especially relevant to people with Parkinson's - including balance, turning and walking backwards.

Although the research is still in its early stages, it seems that people with Parkinson's are already in the mood for dancing. Watch people in Newport having a tango taster session and check out a US news report on a tango trial for people with Parkinson's in Washington

Gina Ward from our younger people's group in Leicester runs a tango class:

"It's a great way to have fun and meet other people with Parkinson's. And the classes have attracted people who wouldn't come to regular group meetings."

Have you been tangoed? Share your experiences below or email us at research@parkinsons.org.uk

Minister pledges protection for carers' support

Last week, Care Services Minister Paul Burstow announced that there would be no cuts to the carers grant in 2010/11 – a £256million budget that provides local authority funding for carers' support and respite.

And speaking this week at a parliamentary reception for carers during Carers Week he promised to push ahead with further reforms to help carers, including better access to respite breaks.

At a time when all the talk has been about which frontline public services are going to be hit hardest by government spending cuts, we welcome the news as a small victory for carers throughout the UK.

But as Carers Week has highlighted this week, there is still a long way to go in providing full-time carers with the right level of consistent support, to enable them to have a life of their own.

The results from a recent survey highlighted the emotional, physical and financial impact of caring for someone full-time. One of the most startling results was that 80% of carers have been forced to give up leisure activities and going out socially as a result of their role.

If you care for somebody with Parkinson's or you are a person with Parkinson's who receives care from a loved one, we'd like to hear from you. Share your stories with us here, or email pr@parkinsons.org.uk

Carers have no life of their own

You only have to read some of the real life carers' stories on our website to realise the incredible physical, emotional and financial toll involved in caring for a loved one with Parkinson's.

That's why we're one of seven national charities supporting Carers Week (14-20 June) this year, which is centred on the theme, 'a life of my own' - highlighting the everyday things that carers often give up to fulfil their vital role.

Over 10,000 events and activities are taking place across the country to let carers know that they're not alone, and that help and support is available. We will also be running information events for carers of people with Parkinson's

We'd love to hear about your plans for activities around Carers Week. Also, if you have a carers' story to share then you can comment here, or email us at pr@parkinsons.org.uk

New dementia strategy in Scotland

This week the Scottish Government launched the first Dementia Strategy in Scotland, to make sure people with all forms of dementia get the health care services they need.

One in three people with Parkinson's have Parkinson's dementia, so we've been involved in the development of the strategy - with two carers of people with Parkinson's dementia on the Government's workstream development groups.

But overall, we think the strategy is quite disappointing.

On the upside, we've raised the profile of Parkinson's dementia - a fairly uncommon form of dementia - to the authorities in Scotland and have made a start in showing that more action is needed.

But the downsides are that the Government in Scotland hasn't put forward any extra money or resources to make the changes that we need - and the strategy overall is focused on more 'typical' dementias, such as Alzheimer's. This means people with less common types of dementia, like Parkinson's dementia will keep struggling to get proper diagnosis and support.

We know that people with Parkinson's dementia have problems getting appropriate services in Scotland. This is something we campaign on as part of our Fair Care for Parkinson's campaign, which you can support through our National Campaigns Network.

If you haven't been able to get the support you need, let us know at pr@parkinsons.org.uk or phone our helpline on 0808 800 0303.

A new Colombian President with Parkinson's?

Now that our new Prime Minister has moved into Number 10, you may be missing all the election fever. Well, fear not - the leadership race is just hotting up in the South American republic of Colombia!

The front-runner, according to the latest polls, is the leader of their Green party, Antanas Mockus. A former maths professor and previous mayor of the Colombian capital Bogotá, Antanas has been responsible for stunts such as hiring 420 mime artists to mock drivers committing traffic offences and persuading more than 60,000 Bogotans to voluntarily pay an extra 10% in taxes.

But Antanas' unusual approach to politics seems to be working and if he wins the election this Sunday he will make history. Not only will he be the world's first ever Green head of state but also the first to be elected after being diagnosed with Parkinson's.

So, with a matter of days until Colombians go to the polls, the rest of the world waits to see whether Antanas Mockus' adoring public will follow their hearts and make history.

How would you feel about electing a Prime Minister with Parkinson's? Have you continued to work yourself after being diagnosed?

Let us know your thoughts and inspiring stories which, like Antanas Mockus' obvious zest for live, show that life doesn't have to stop after a Parkinson's diagnosis.

Puppy love brings health benefits for Parkinson's

Now that the warm weather has finally arrived, and our countryside is full of bluebells and spring flowers, it's time to reap the benefits of exercise in our great outdoors.

We know how exercise can benefit people with Parkinson's. It can help control symptoms, it's great for building confidence, and the social aspects of meeting like-minded people can make a huge difference.

The benefits of pet ownership are also well known, and The Sun last week reported on how having a dog has made a big difference to one young woman living with Parkinson’s, who noticed improvements in day to day activities like walking and sleeping. She also felt less depressed.

One theory is that the responsibility of looking after the dog and the exercise involved may have had an effect on stimulating dopamine. Dopamine producing nerve cells are lost when Parkinson’s develops. Amanda with her dog Benji

After the Sun ran its story, our Communications team received an excited call from Parkinson’s UK member Amanda Osborne who said “that’s me and Benji they are talking about!”

Right: Amanda with dog Benji

Amanda went on to say that Benji had really changed her life for the better.

Has your four-legged friend has made a difference to your life with Parkinson’s? We’d like to hear your stories.

2010 General election result

What a dramatic week for politics!

With the first formal coalition Government for 70 years, it's clear just how important our campaigning work will be, at a time when funding is so tight.

We've been campaigning on our 3 Pledges for Parkinson's manifesto, calling on the new Government to act on things that people with Parkinson's say are priorities and make economic sense.

Parkinson's UK wants everyone affected to get the right health and social care, no matter where they live. We want people with Parkinson's to have the financial support they need. And we want long-term investments in neurological research, to help us find better treatments and a cure.

Our local groups have been campaigning throughout the election, inviting their local candidates to meet with them, and asking them to sign up to our pledges.

Of the 220 parliamentary candidates who signed up, 40 were elected and many will be playing a part in the coalition. We'll be working hard to make sure the new Government sees the value in protecting Parkinson's services like specialist nurses and funding for medical research, which save money and help people stay independent.

Please join our campaigns network, to get updates on the campaign and how you can help, and let us know below about any contact you’ve had with your local MP.

Parkinson's Awareness Week 2010 - In Pictures

We've been getting loads of photos in from events all over the UK, from Parkinson's Awareness Week 2010.

See below for some of them, and thanks to everyone who took part in the week.

And if you have any nice pictures of your event, please send them in to us at pr@parkinsons.org.uk or add them to our Flickr group

Bexley and Dartford Branch's information stand

Jo Close (in Parkinson's UK t-shirt) who had a cake sale at work and a collection

Cheering our runners at the London Marathon

A Party for Parkinson's in Stockton on Tees

Marian Dent at her coffee morning and 'bring and buy'

Andy Hannath running for us at the London Marathon

A tea and shortcake evening in Dumfries with a talk from a Sahara trekker - hence the African band

Pedal power for Parkinson's

Professor Bloem, a neurologist in the Netherlands, recently reported on a gentleman with Parkinson's who is unable to walk without shuffling and freezing but rides his bike for miles every day. Astounded, Professor Bloem spoke to other people with Parkinson’s and found they could all cycle too.

Videos of the man trying to walk and then riding his bike appeared online in The New England Journal of Medicine and have created quite a stir amongst Parkinson's researchers.

What we don't understand is why when walking is such a challenge, cycling can be a breeze. One theory is that cycling uses different parts of the brain to walking that are not as severely affected in Parkinson's. Figuring out what is going on inside peoples' brains whilst they are cycling could help us understand how we organise and perform movements - which could lead to better treatments and therapies.

And we've been hearing from you too - like Tony whose walking is becoming more difficult, but feels much more confident when he's on his tricycle - you can watch Tony on his trike and the local group go companion cycling

Are you a keen cyclist like Tony or have you found other ways to get out and about? Please share your experiences below or email research@parkinsons.org.uk

Spreading the word about Parkinson's research

Advances in Parkinson's research is always a topic that people are interested in - whether they are affected by the condition, are one of our other supporters or even members of the public.

During Parkinson's Awareness Week this week, we've been using the opportunity to talk about research to get new people involved with us.

On Wednesday, eminent neuroscientist Baroness Susan Greenfield CBE gave a lecture to around 130 people in Cambridge on the latest research approaches to beating the condition.

And last night ITV broadcaster John Stapleton hosted our Parkinson's Awareness Week lecture, "From Care to Cure - living with Parkinson's", at the London offices of Aberdeen Asset Management, who generously sponsored the event.

Among the guests were many of our biggest funders from the worlds of Charitable Trusts, Foundations and Corporates alongside individual supporters too.

Dr Huw Morris from the University of Cardiff presented on developments in genetics for people with Parkinson's. Simon Challis, a younger person with Parkinson's shared his personal experiences of the condition and our Chief Executive Steve Ford outlined our plans to meet and exceed our funding target of £110million over the next 5 years.

Keep spreading the word about research - and let us know any ideas you have.

Fundraising for Parkinson's Awareness Week

We're halfway through Parkinson’s Awareness Week and hundreds of people have joined us to help find a cure and improve life for everyone affected by Parkinson's.

We have been fundraising at major railway stations up and down the country from the public this week, and so far we’ve raised over £4,000 from just four collections. One volunteer reported a single donation of £120 and we’ve even had a few celebrity sightings such as Lauren from BBC's Over the Rainbow!

Local media coverage is showing the range of fundraising going on in towns around the UK too. Paul Betney is performing a comedy show with all proceeds to help Parkinson’s in the North West, Somerset Branch has raised money with the local church in Yatton, Terry Clay is running the London Marathon this weekend to raise vital funds, and a school in Liverpool’s Year 9 class has even chosen us as the charity they want to support all year.

Last weekend's scheduled skydive was cancelled because of the volcanic activity in Iceland, but it didn't stop our celebrity supporter, Amy Guy from raising awareness about the event too.

Let us know how your fundraising efforts are going, or find out how our donated funds are used and support us during Parkinson's Awareness Week.

Gearing up for Parkinson's Awareness Week

Parkinson’s Awareness Week starts on Monday 19 April and we’re spreading the word about the condition and about Parkinson’s UK in every community.

Local groups and our local teams around the UK have been planning for months to put on activities like nature walks, information stands in hospitals and other drop-in events. Volunteers have been collecting bric-a-brac and baking cakes to sell at market stalls all around the UK. They've arranged supermarket collections, organised guest speakers to talk about Parkinson’s research, sold tickets for concerts and there’s even an Antiques Roadshow-style auction!

Apart from the work we all do together to raise awareness of Parkinson’s in the national media, Parkinson’s Awareness Week is a chance for us to get out into the community and be seen by the general public.

But it doesn’t hurt to get a bit of local media coverage as well:

Look and see what’s on in your area And if you're holding an event next week tell us about it here. We'd love to hear how it goes.