Our history

We've come a long way since 1969, when Mali Jenkins founded the Parkinson's Disease Society - now Parkinson's UK.

In 1969, we were founded in a one-room office in Putney, London.

Today, we're a dynamic network of expert staff, health and social care professionals, volunteers and researchers. We work together to improve life for everyone living with Parkinson's in the UK and to bring forward better treatments and a cure.

Here's a bit about our history.

Mali Jenkins, our founder

4 July 1907-11 March 1989

In 1969 Mali Jenkins founded the Parkinson's Disease Society - now Parkinson's UK.

Mali's sister, Sarah Jenkins, had been living with Parkinson’s for some years and was cared for at the family home.

Mali looked for patient associations to help people affected by Parkinson's, but searches of local libraries showed that no such thing existed.

Frustrated to find no literature in layman's terms about her sister's condition, Mali decided to find out what she could about Parkinson's.

She placed adverts in the personal columns of a couple of newspapers asking people to come forward who were interested in forming an exploratory steering group. Mali chaired the committee and her sister Eryl was secretary. Other friends and family were asked to help.

The first meeting took place at Westminster Hospital and 16 people attended.

It was from this that the idea of starting a charity grew. And on 26 February 1969 Mali Jenkins founded the Parkinson's Disease Society - now Parkinson's UK.

The Society had 3 aims:

  • to help patients and their relatives with the problems arising from Parkinson's
  • to collect and disseminate information on Parkinson's
  • to encourage and provide funds for research into Parkinson's

Today we focus on research as well as information and support.

We have also expanded to improve services for people affected by Parkinson's through education and training for professionals and campaigning.

Our progress through the decades

1960

Levodopa was the first major breakthrough in the drug treatment of Parkinson's in 1969.

Today, a range of drug treatments are available to control the symptoms of Parkinson's.

1970

1970

Our first local Parkinson's groups opened in Tunbridge Wells and Halifax.

We now have around 365 local groups across the UK offering friendship and support to everyone affected by Parkinson's.

1971

Our first publication was introduced, Parkinson's disease - a booklet for patients, friends and families.

Today we provide information and support in many ways.

This includes our free confidential helpline 0808 800 0303, specialist staff, website and network of local groups across the UK.

1980

1984

Our Parkinson's UK Brain Bank opened, enabling crucial research into Parkinson's.

We now have the UK's largest human brain bank dedicated to Parkinson's.

We provide brain tissue to researchers around the world to develop better treatments and make progress towards a cure.

1986

Research identified oxidative stress as a key player in Parkinson's.

1988

Our first overseas sponsored trek took place, raising more money for our work.

Since then, our range of fundraising activities has grown massively, giving people lots of ways to get involved and fundraise.

1989

The first specialist Parkinson's nurse was appointed, providing specialised local care for people with Parkinson's.

There are now more than 300 Parkinson's nurses across the UK.

1990

1990

Princess Diana became patron.

1992

Our first team ran in the London Marathon.

1994

UK patients participated in one of the first transplant trials for Parkinson's.

1996

The Duchess of Gloucester became patron.

1997

We were chosen as one of GMTV's 'get up and give charities'.

1998

We published our first education tool for professionals, Parkinson's Aware in Primary Care.

Today, our Education team delivers courses for health and social care professionals who work with people with Parkinson's in all parts of the UK.

1999

We launched our free and confidential helpline 0808 800 0303, with specialist nurses and advisers.

2000

2002

Research proved that Parkinson's nurses significantly improve quality of life for people affected by the conditions.

2004

2 genes associated with inherited Parkinson's were discovered, giving us a better understanding of the causes of Parkinson's.

2006

We launched our Get It On Time campaign to make sure people with Parkinson's admitted into hospitals and care homes get their medication on time, every time.

2007

Jane Asher became our president.

Prescription charges for people with Parkinson's were abolished in Wales.

Our research spend increased to more than £4 million. In 1969 our research spend was £205.

2008

We launched our online discussion forum for people affected by Parkinson's.

We introduced information and support workers across the UK so everyone affected by Parkinson's has access to the services they need. They are now called Parkinson's local advisers.

2009

2009 was our 40th anniversary, when we looked back on our research achievements made since 1969.

We launched our Parkinson's Brain Donor Appeal asking people to pledge to donate their brains for research. We now have over 2,300 new brain donors from across the UK.

Our Fair Care for Parkinson's campaign put pressure on governments to improve access to the health and social care for everyone affected by Parkinson's.

We set up our Campaigns Network, allowing people with Parkinson's, their carers and families to get directly involved in our campaign work.

2010

2010

We changed our name to Parkinson's UK.

We launched a new 5-year strategy (2010-2014) focusing on finding a cure and improving life for everyone affected by Parkinson's.

2011

We were nominated and won the 'Charity of the Year with income of more than £1 million' category at the prestigious Charity Times Awards.

This was a testament to all the incredible work that our staff and volunteers do every day across the UK.

2012

We launched Tracking Parkinson's, the world's largest ever in-depth study of people with Parkinson's. Thousands of people with Parkinson's across the UK got involved.

At the end of the year, our first ever public awareness campaign saw Parkinson's UK adverts appearing on billboards, on trains and in newspapers across the UK.

2013

Our self-management programme launched - training volunteers affected by Parkinson's to support others in their community to find practical ways to manage life with Parkinson's.

A team of staff, volunteers and a Parkinson's nurse travelled to the World Parkinson Congress 2013 in Montréal to showcase our work and learn from others around the world.

2014

We were the Credit Suisse UK Charity of the Year 2014. This raised a record-breaking £1.2 million.

In Parkinson's Awareness Week 2014 we asked the public to find out how Parkinson's takes away control and how they can give some back. We had around 1,100 pieces of media coverage across the UK.

2015

The UK Parkinson's Excellence Network launched, bringing together health and social care professionals to transform care for people affected by Parkinson's.

The strategy for Parkinson's 2015-2019 set out how we - and the whole Parkinson's community - will bring forward the day when no one fears Parkinson's.

Our first dedicated online volunteer induction was new in 2015, to support everyone volunteering with us.

The Critical Path for Parkinson's launched - a groundbreaking new initiative to improve clinical trials for Parkinson's.

2017

The Parkinson's Virtual Biotech launched with a world-first partnership and the creation of a £1million virtual biotech company, Keapstone Therapeutics.

As our drug development arm, the Virtual Biotech fast tracks the most promising scientific discoveries to rapidly develop and test promising Parkinson's treatments. Unlike our traditional research grants, projects supported within the Virtual Biotech are managed and developed in partnership with Parkinson's UK.