Exciting times for Parkinson's research in Europe

Our latest blog entry is from our director of research and innovation, Dr Kieran Breen, who has just returned from the launch of a European research strategy for neurology.

Earlier this week, I attended the launch of the Joint Programme for Neurodegenerative Disorders research (JPND) strategy.

This is an initiative, partly funded by the European Union (EU), to make sure research into neurodegenerative conditions, such as Parkinson's, is better integrated within Europe.

Parkinson's UK has been a key player in shaping this strategy and I represented the charity - as well as the European Parkinson's Disease Association (EPDA) - at 2 of the steering group meetings last year.

They also asked for details of the research that we are supporting, as Parkinson's UK is a major funder of Parkinson's research in Europe. In fact, we aim to spend at least £25million over the 5 year period 2010-2014.

The JPND research strategy highlights a number of priority research areas. These are the same as the Parkinson's UK research strategy launched in 2010 – disease pathology, animal models, drug screening and biomarkers. Maybe they 'stole' our ideas!

The JPND research programme aims to streamline research within Europe. While the EU will cover the administrative costs, the majority of the funding will come from the individual countries. So Parkinson's UK will have a great opportunity to be involved in some exciting new research. And, as a major funder of this type of research, we can help to shape the agenda.

I see this as a real step forward. It shows that the EU has a definite commitment to the study of neurodegenerative conditions, including Parkinson's.

And I think that this will be reflected in the 'piece of the pie' that will be available to us from the upcoming research strategy Horizon 2020. This will fund all areas of scientific research and is estimated to be worth up to €80billion in 2014-2020.

Over the coming months, you can be sure that we will be working hard to make sure that Parkinson's UK remains at the heart of research in Europe. This will bring us closer to our goal - to find a cure for Parkinson's.

Find out more about our research plans by emailing research@parkinsons.org.uk

Sad day for democracy

Yesterday the House of Commons voted to balance the deficit on the backs of people with Parkinson's, and other disabilities and long-term conditions, and voted to support the Welfare Reform Bill's cuts to the sickness benefit Employment and Support Allowance (ESA).

Worse still, the Government is using an archaic parliamentary rule to ensure that the Bill cannot return to Lords for any further votes, undermining the usual democratic process.

The main effect of the Bill is to limit contributory ESA for people in the Work Related Activity Group (WRAG) to 1 year. When the Bill was in the Lords they had voted to increase this to a more reasonable 2 years.

We think time-limiting a sickness benefit to one year is unfair to people with Parkinson's.

During the debate, when Dame Anne Begg was interrupted by noise from other MPs, she countered: "I'm sorry that you find all this very funny. The people with Parkinson's disease, the people with MS do not find this funny. It's their lives that are being undermined. It's them that will lack an independent income."

We couldn't have said it better ourselves, Dame Begg.

What does this mean for people with Parkinson's?

The year limit does not affect people who are in the Support Group (those who are not expected to work).

But many people with Parkinson's are in the Work Related Activity Group, where they are deemed capable of re-entering work subject to receiving a lot of support because of their condition. Only 6% of people in this group find work within a year.

The Bill also means that on the day of the introduction of this rule, in April 2012, contributory ESA will stop for many people who have received it for a year or more.

It may be that there are alternative benefits for people affected by this change. But entitlement to income-related ESA, or any other benefits, will depend on the circumstances of the claimants, and of their partners or spouses.

So anyone who thinks that this may affect them should seek advice now, from a Citizens Advice Bureau, or from our confidential helpline 0808 800 0303.

This time limit means that it's even more essential that everyone living with Parkinson's is correctly assessed for ESA, so they are in the right group for them.

We need evidence from people affected by the inaccurate ESA assessments – tell us your stories by emailing campaigns@parkinsons.org.uk

Exciting times for stem cell research

This week, early results from the world's first clinical trial using embryonic stem cells to treat eye conditions suggest the method is safe. This is an important step towards developing stem cells as a treatment, and offers hope for many conditions for which there isn't a cure at the moment – including Parkinson's.

Stem cells have great potential to grow new nerve cells that could one day be used to replace those lost in Parkinson's. And research around the world is making massive strides towards this goal.

In November last year, we reported on research in the US which used nerve cells grown from human embryonic stem cells to repair the brain in 3 animal models of Parkinson's.

While this early research is promising, more work is needed before stem cells can be tested in people with Parkinson's.

It's impossible to predict how long it will take for stem cell therapies to become a reality for people with Parkinson's. But we're funding some of the best and brightest UK stem cell scientists to move this vital research forward as quickly as possible.

Parkinson's UK-funded researcher Dr Rosemary Fricker answered some questions about stem cell research in our stem cell Q&A.

If you have any thoughts or questions about stem cell research, please add a comment below or email us on research@parkinsons.org.uk

How does your protein fold?

To do their jobs properly inside cells, proteins must first fold themselves into the correct shape. If they don't, trouble can result.

Hundreds of conditions, including Parkinson's, involve proteins that misfold and stick together which means cells can't work properly and eventually die.

In Parkinson's, the main culprit seems to be a protein called alpha-synuclein which misfolds and forms sticky clumps called Lewy bodies in the nerve cells that die. And research that we've funded has shown that alpha-synuclein may be responsible for the spread of the condition throughout the brain.

So finding ways to stop key proteins - like alpha-synuclein - misfolding holds great promise for developing new and better treatments.

Now, 2 exciting new research studies from a US research team may bring the hunt for new treatments closer.

In the first, published in PLoS Genetics, they pinpointed 9 genes that seem to play a vital role in keeping proteins inside cells healthy. And in the second, published in Nature Genetics, they identified 30 small molecules that help cells make sure their proteins are properly folded - which may have potential for treating conditions like Parkinson's.

These studies suggest that the key to folding may be 'chaperones' - proteins whose job is to help other proteins fold correctly and to help dismantle and remove damaged or misfolded proteins from our cells.

One of our current research projects, led by Professor Chris Moody at the University of Nottingham, aims to develop new drugs for Parkinson's that work by targeting chaperones (PDF file).

Parkinson's UK members recently visited Chris Moody's lab to hear more about his project.

There are lots of ways that people living with Parkinson's can get involved in our research. What would you like to do? Email us on research@parkinsons.org.uk

Looking ahead - hopes and plans for 2012

Now the tinsel is packed away, there is a lot to look forward to in 2012 - the year of the London Olympics, the Queen's Diamond Jubilee and, of course, Parkinson's Awareness Week 2012.

This year, Parkinson's Awareness Week runs from 16-22 April. Plans are underway to encourage as many people as possible to join us and to help raise funds to find a cure for Parkinson's.

With exciting research plans coming up this year, there are many ways to help us find a cure and improve the lives of everyone affected by Parkinson's. You can get involved in whatever way suits you, whether that's taking part in a research study or joining our Research Support Network.

With overseas adventures, running events like Run Highclere at Highclere Castle (the home of ITV1's 'Downton Abbey') and Party for Parkinson's, there are many way to help fundraise too, to help us in our vital work.

We'll continue to campaign to make sure that people affected by Parkinson's have the services and support they need. To help us make politicians and decision-makers listen, you can write to your MP, join our Campaigns Network or tell us your experiences about the NHS, benefit system or social care.

Let's build on the momentum of 2011. There's still work to do and we need you.

What are your hopes and plans for 2012? Add your thoughts below.