Parkinson’s UK: Golden anniversary

 

On the 26 February (1969), Mali Jenkins founded ‘The Parkinson’s Disease Society’ (now Parkinson’s UK) in a one-room office in Putney, London.

The Society initially 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

This year (2019) represents the 50th anniversary of the organisation.

In today’s post, we will discuss how the organisation has grown and where they are heading to in the future.

 


Source: Parkinson’s foundation

In 2017, the SoPD missed a trick.

We should have observed the 60th Anniversary of the Parkinson’s Foundation.

It is a fantastic resource for the Parkinson’s community, and it has a particularly interesting history as it started in two different places at basically the same time.

Que?

In 2016, the National Parkinson Foundation merged with the Parkinson’s Disease Foundation to form the Parkinson’s Foundation.

The Parkinson’s Disease Foundation was started in 1957 by businessman William Black – founder of a New York restaurant business, Chock Full O’Nuts.

William Black. Source: NYTimes

He started the Foundation after discovering that his controller and close friend had been diagnosed with Parkinson’s.

Mr. Black used his own money to establish the Foundation and funded the initiation of a major research center for Parkinson’s at Columbia University medical school.

At the same time that Mr Black was going about his good work, in Miami (Florida), Mrs. Jeanne C. Levey founded the National Parkinson Foundation after her husband was diagnosed with the condition.

For 22 years, until her death at age 92, Mrs. Levey nurtured the Foundation and watched it grow.

The lady in the middle is Jeanne Levey. Source: Gerald R. Ford Museum

These foundations served as two of the primary support services for people with Parkinson’s in the USA until their merger in 2016.

Anyways, having slipped up in 2017 and missed an opportunity, we will try to be more vigilant of anniversaries going forward.

That said, it is time to apologise for not acknowledging the 50th anniversary of Parkinson’s UK earlier this year.

When did Parkinson’s UK start?

On the 26th February 1969.

1969 was an amazing year. It was the year that:

  • Richard Nixon is sworn in as the 37th President of the United States (January 20th)
  • The Beatles give their last public performance (January 30th)
  • The first Concorde made its first test flight (2nd March)
  • Humans first walked on the moon (20th July – Apollo 11 & later 19th November – Apollo 12)
  • Woodstock (15th-18th August)
  • The first episode of Scooby-Doo was aired (13th September)

(Trying to put the year in context for you)

Parkinson’s UK started life as the Parkinson’s Disease Society, which was founded by Mali Jenkins.

Mali Jenkins. Source: PDUK

Mali Jenkins founded the Parkinson’s Disease Society, because she had became frustrated by the lack of help for people with Parkinson’s in the UK and she decided to do something about it.

Mali’s sister, Sarah Jenkins, had been diagnosed with Parkinson’s several years earlier, and was being cared for by her family. Mali searched for support groups or associations that could help people affected by the condition, but she discovered that nothing existed.

And she decided that this was not acceptable.

Adverts were placed in several newspapers, asking for interested people to help form an exploratory steering group. Mali chaired the group, with her sister Eryl acting as secretary. The first meeting took place at Westminster Hospital.

Westminster Hospital. Source: Buildington

A total of 16 people attended that first meeting. And it was there that the idea of starting a charity was proposed.

The charity – which was to be called the Parkinson’s Disease Society – had 3 goals:

  • 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

Interesting. What has happened since then?

The charity established a nation-wide network of support groups.

The first of these local Parkinson’s support groups was started in 1970 in Tunbridge Wells and Halifax. And from that humble beginning, the wider network of 365 groups has developed.

The following year the charity produced their first pamphlet, “Parkinson’s disease – a booklet for patients, friends and families“. It was a useful piece of reading for a community that had been deprived of much lay person information about the condition.

(In our modern age of immediately available internet information, it is easy to take for granted what a precious resource this little pamphlet must have been in 1971)

In the 1980s, the society turned its attention to research, with the establishment of the Parkinson’s UK Brain Bank in 1984.

Parkinson’s UK Brain bank. Source: IFLScience

The 1980’s also saw the first specialist Parkinson’s nurse being appointed in 1989. These are specialists who can give tailored advice based on the lifestyle and symptoms of individuals, and they are a very useful source of information regarding regional services for the Parkinson’s community. The Parkinson’s nurses network now numbers 300 dedicated nurses who provide local care for people with Parkinson’s.

Parkinson’s UK nurses. Source: PDUK

In 1990, Princess Diana became a patron of the society, followed by the Duchess of Gloucester who became a patron in 1996.

Princess Diana. Source: Nottinghampost

In 1998, the organisation produced their first education tool for professionals (“Parkinson’s Aware in Primary Care“). And in 1999, the society launched their free and confidential helpline (0808 800 0303).

With the turn of the century, English actress/author Jane Asher became the president of the society.

Jane Asher. Source: Zimbio

And the society increased the amount spent on research to more than £4 million (In 1969, their total research spend was just £205).

In 2008, the Parkinson’s Society launched an online discussion forum for people affected by Parkinson’s.

Major changes came in 2010, when the society changed their name to “Parkinson’s UK”.

They also launched a 5-year strategy (2010-2014) focused on finding a cure and improving life for everyone affected by Parkinson’s.

In 2012, Parkinson’s UK launched Tracking Parkinson’s – which was at the time the world’s largest ever in-depth study of people with Parkinson’s. It was an observational study which involved collecting clinical data and biosamples from over 2,500 people with Parkinson’s across the UK.

In 2015, the UK Parkinson’s Excellence Network was launched. It is a tool aimed at service planners, commissioners of services and health professionals involved in delivering Parkinson’s care. It brings together health and social care professionals to help transform care for people with Parkinson’s.

2015 also saw the roll out of the organisation’s strategy for Parkinson’s 2015-2019. Again focusing on better treatments/curative therapies, empowering members of the Parkinson’s community, and providing the best standard of care.

And part of this new strategy was the launch of The Critical Path for Parkinson’s – a groundbreaking new initiative to improve clinical trials for Parkinson’s.

The consortium planned to bring together pharmaceutical companies and academic partners, in order to work together toward the common goals of establishing best practices/protocols for planning and conducting clinical trials in early Parkinson’s.

Wow! Parkinson’s UK has done a lot! Is that all?

Nope, we’re not finished yet.

Another aspect of Parkinson’s UK’s plans for the future has been their Virtual Biotech initiative, which was launched in 2017.

It began with the creation of a £1million virtual biotech company, Keapstone Therapeutics (Click here to read a previous SoPD post on this topic).

Since then, additional virtual biotechs have been announced, such as a partnership with US company Neurolixis to accelerate the development of a promising new drug to tackle dyskinesia (Click here to read more about this) and a partnership with research organisations Selcia and Cresset to develop new drugs that could both improve symptoms and slow the progression of Parkinson’s (Click here to read more about this).

In 2018, Parkinson’s UK published a second report on the incidence of Parkinson’s in the UK. The study found an estimated population of 145,519 people living with the condition in the UK (Click here to read that report).

And finally, on the clinical trial front, Parkinson’s UK was a major supporter of the recent Bristol GDNF study (Click here to read a previous SoPD post about this), and they are actively involved with discussion on how to take this approach forward.

For readers interested in reading more about the history of Parkinson’s UK, I can recommend reading their history page and a recent medium article by Lynn Duffy on this same topic. Much of the information used in this post was sourced from these pages.

What does it all mean?

In 1969, when Mali Jenkins was going through the first steps of setting up the small charity that would go on to become the powerhouse that Parkinson’s UK is today, I wonder if she could possibly have envisioned the amazing asset that the organisation has become for the Parkinson’s community.

Since 1969, the organisation has grown into an important corner stone of support for the wider Parkinson’s world and a major funder of research into the condition. It will be very interesting to see how the charity continues to grow and thrive as it faces a growing need for its services (as the number of people with Parkinson’s increases) and embraces the exciting future that scientific research holds.

 


EDITOR’S NOTE  The author of this post is an employee of the Cure Parkinson’s Trust, but he is associated with Parkinson’s UK through his role as President of his local Parkinson’s UK support branch. Parkinson’s UK has not asked for this post to be written, nor has the author had any discussion with the organisation about the generation of this post. This post has been provided by the author solely for the purpose of sharing what he considers to be an interesting story of a remarkable charity. Other Parkinson’s charities will be highlighted in future posts.


The banner for today’s post was sourced from Parkinson’s UK

One comment

  1. iscatmen

    Thank You, Simon, for all information and your personal efforts. It has a great value and it is absolutely useful that you are using “Plain English information” Thank you so much! WE LOVE YOU!

    Like

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