A really good call for people with Parkinson's

Last week, we launched a first in the charity world - pay-monthly mobile phones that donate money to Parkinson's UK. Here, Rachel Backshall, our Head of Business Development, explains how the project came about.

"It seemed like a very simple idea; develop a mobile phone that lets people donate to the charity when they use it. 2 years later, it is fantastic to see the project finally come to fruition.

"Phones for Parkinson's started out as the brainchild of one of our supporters, Charles Easterman, who had started to have trouble using his mobile phone after being diagnosed with Parkinson's. Charles set us the challenge of developing an app that would make phones easier for people with Parkinson's to use. While developing this app, it dawned on us that our foray into phones could go one step further.

"Mobile phones were increasingly being used by charities through various 'text to donate' schemes, but we wanted to turn the simple act of using your mobile phone into a way to raise funds - and Phones for Parkinson's was born.

"Having already worked with Talking Telecoms to look at how people with Parkinson's were able to use a smartphone - we decided to team up to see if we could make this project a reality.

"Using Talking Telecoms' existing relationship with Orange, we were able to strike a deal where four tariffs and four popular handsets could be offered to customers, with 45 per cent of the profits from the cost of the handset and ongoing monthly bills being donated to us. We hope to raise £50,000 from this partnership in the first year.

"Although the project is still in its infancy, the reaction to the idea has been fantastic and we are already looking into how we can develop the project further, expanding into pay-as-you-go sims and other apps and accessories.

"We are really excited to see how Phones for Parkinson's will grow and with the number of active mobile phones in the UK now outnumbering those who live here, we can finally say that it really is 'good to talk'."

To find out more about Phones for Parkinson's, visit the dedicated pages on our website or call 020 3476 2626.
Paul Jackson-Clark, Charles Easterman and Rachel Backshall at the launch of Phones for Parkinson's

Duplication in Parkinson's research? Not on our watch

We’re often asked about duplication in Parkinson’s research, and why seemingly similar projects are being carried out by different research teams around the world.

A prime example of this is stem cell research.

In August last year
Parkinson's UK-funded scientists succeeded in growing new nerve cells with a rare inherited form of Parkinson's.

This was followed swiftly in February this year by
a research team in the US who announced that they too had made skin cells from nerve cells with genetic Parkinson's.

On the surface, these 2 achievements look identical. But dig a little deeper and you'll find a subtle but crucial difference.

Our researchers grew nerve cells with a mutation in alpha-synuclein, whereas the US team were studying cells with a change in the Parkin gene – 2 very different genetic mutations that have vastly different impacts on the nerve cells.

At Parkinson's UK we work hard to make sure every penny raised for research works as hard as possible.

Our rigorous research funding process involves international experts and people affected by Parkinson's which helps us to avoid duplication and make sure the projects we fund are meaningful to people living with condition.

We talk to other key players in the research community - including pharmaceutical companies, researchers, other funders and government bodies - to keep us right at the heart of international Parkinson's research.

And we're helping researchers to share their knowledge and work together.

Our research conference brings the UK Parkinson's research community together to share and discuss all the latest research.

And we provide funding to researchers for themed research workshops to bring people in their field together and develop new ideas.

So next time you see a familiar piece of research news, look a little closer – it's probably more exciting than you think.

Tell us your thoughts on Parkinson's research by visiting our forum, emailing research@parkinsons.org.uk or adding your comments below.

Volunteer John is 'Ultimate Local Hero for 2012'

One of our amazing volunteers, John Lange, from Stirling, was honoured as 'Ultimate Local Hero for 2012' and 'Charity Hero for 2012' by his local radio station, Central FM, last week.

John, 51, was diagnosed with Parkinson's 7 ago. He set up the Forth Valley Young Parkinson's Group a year ago and has been a tireless fundraiser and campaigner for Parkinson's UK.

John received his award at a special ceremony celebrating people who have contributed to make their local area a better place. 

But his nomination had been a surprise kept by his wife and close friends. He didn't know he was up for an award until his name was read out.

"I do what I do to help others with Parkinson's," said John.

"I've had great support from wife, kids and granddaughter, my brothers and sisters and others who don’t even know me. I am deeply honoured."

Volunteers' Week 2012 ends today, 7 June. It celebrated the fantastic contribution that millions of volunteers make across the UK.

In 1969, our charity was started by a group of volunteers and they are still at the heart of everything we do.

Find out about opportunities to volunteer or tell us your volunteering stories volunteering@parkinsons.org.uk

23andMe patents Parkinson's gene

This week the 'personal genomics' company, 23andMe, announced their first patent on a discovery from their web-based Parkinson's study.

A patent is an exclusive right given by law to inventors to make use of, and develop, their inventions for a limited period of time.

23andMe's patent relates to a
subtle change in the genetic code that may reduce a person's risk of developing Parkinson's.

In science, patents can be used to protect new discoveries, like potential drugs, from being exploited by others. This means patented ideas and discoveries can be bought, sold and invested in.

Over 6,500 people with Parkinson's from all over the world have taken part in the study so far. Participants fill in an internet survey about their
symptoms and lifestyle and provide a sample of saliva containing their DNA.

It's very
rare for Parkinson's to be inherited. But access to such a huge amount of information has allowed the researchers to pinpoint genetic changes that slightly affect the risk of developing the condition.

The question of whether genetic discoveries can be patented is a hot topic that's
currently being debated in the US courts.

There are
2 sides to the story. Companies like 23andMe argue that patents are the best way to translate discoveries into new treatments. But critics say patents hinder the progress of academic research.

What do you think about patenting Parkinson's genes? Tell us your thoughts by leaving a comment below or email us on