Uniting to accelerate research

Every year Parkinson’s UK comes together to acknowledge the work of our dedicated volunteers, through our Volunteer Awards. This year 29 research volunteers won and took centre stage. Find out why we’re celebrating.

The Research Team at Parkinson’s UK is made up of 13 members of staff, where the work we do is being shaped and powered by 320 volunteers. This is supported by our ever growing Research Support Network of almost 6000 people who are engaging with research news and opportunities. Together, we are determined to accelerate research towards better treatments and a cure for the 145 000 people living with Parkinson’s in the UK.

Parkinson’s UK continue to embed research involvement in everything that we do, making sure we are working with the Parkinson’s community every step of the way. This is key to delivering research that changes lives for the better and focusing on what matters to those affected by the condition. This year has seen many triumphs — from delivering our Par-Con event and research talks to all corners of the UK, and beyond, to launching a new toolkit to improve people’s experience of taking part in research.

The hard work from all of our dedicated volunteers has not gone unnoticed, and we want to say a huge thank you to everyone who supports Parkinson’s research, with special congratulations to our Volunteer Award winners.

Award winning work

Improving the experience of participating in research

Winning group: Participation Steering Group
Julie Jones, Jodie Keyworth, Alan Cameron, Tom Payne, Laurel Miller, Catherine Addlestone and Jon Day

For over 6 years, this group — made up of people with Parkinson’s or their loved ones, researchers and health professionals — has been working to come up with ways to better share opportunities to take part in research and improve the participation experience.

The group has previously helped to develop our Take Part Hub — a tool on our website that you can search with a postcode for research studies that are looking for participants. To date we have helped 320 studies to find people to take part.

Building on this, over the last year and a half, the group has developed and launched a new toolkit to help researchers stay in contact with their participants. It was created after a Parkinson’s UK survey showed that 72% of people who’ve taken part in Parkinson’s research didn’t hear anything after contributing. We needed to help change this. Together, we are now spreading the word to get researchers using the tools.

The toolkit is relevant to all areas and aspects of health research, not just Parkinson’s. It’s pioneering in making research more transparent and to ensure people are engaged and connected after they have taken part in a study.

This work is testament to how we can work together to drive change and improve research. So, thank-you to everyone involved.

Find out more and watch a video from the group.

Improving lives through research

Winning group: Par-Con event organising team
Carroll Siu, Lizzie Robertson, Clive Bartram, Andrew Hale, David Baines, Neil Morrison, Mark Hutchinson and Laurel Miller

For the very first time at Parkinson’s UK we came together to have a 3 day online event discussing various aspects of Parkinson’s research — Par-Con 2021. This was made possible by the organising group who drove the planning of the event from the ground up, shaping every aspect — from the name, to setting the agenda and planning the sessions. They wanted the event to inspire people to take action, and to offer practical solutions for living with Parkinson’s, proven by research. Topics ranged from diet and exercise to looking at what research is on the horizon.

It’s not too late to watch the sessions from Par-Con. They are available on the Parkinson’s UK YouTube channel.

One of the aims was to reach and include as many people as possible from around the UK and further afield, uniting people with Parkinson’s, loved ones, researchers and healthcare professionals for a truly accessible and inclusive event. This was certainly achieved as we had over 2300 people register from across the UK and as far as places like South Africa and India.

The optimistic and hopeful feel of the event was made possible through the input of our volunteer organising group and was recognised in some of the feedback we received:

“I liked that it was driven by people with Parkinson’s and their interests were at the top of the agenda.”

“Knowledge, commitment, enthusiasm, and overall positive, uplifting atmosphere.”

It’s not just Par-Con that has helped spread the research word this year. It’s been a very successful year for our Research Interest Groups, who’ve been hosting a variety of talks to keep people updated about the latest research and opportunities. We now have 13 groups made up of people with Parkinson’s, their families, loved ones and carers united with researchers and healthcare professionals to drive research forward at a local level. They have organised over 30 sessions to help keep people informed and involved with the latest research.

You can catch up on some of these events by watching the recordings on our website — parkinsons.org.uk/research/research-events

Thanks to all of the people who’ve helped to set up these groups and organise events.

Winning group: Research Interest Group in Wales
Pat Cleary, Colin Young, Ken Howard, Roger Morley-Jones, Jeff Lawrence, Diane Morley — Jones, Eirwen Malin and Karen Shepherd

A particular shout out goes to the group in Wales. They have worked hard to broaden the reach of their Research Interest Group, starting off as the Cardiff and South Wales group, and working hard to bring research news and opportunities to people living all across Wales, especially those in rural areas. They have helped unite the research community in their nation and are keen to campaign for more research opportunities in Wales. They have helped to ensure people are better informed of research news and opportunities to take part in studies and shape Parkinson’s research.

Celebrating individual volunteers

We are also celebrating some of the individuals that have made outstanding contributions to our work this year. From helping us to decide what research projects to fund, to sitting on our Involvement steering group to ensure all research is shaped by people with Parkinson’s, their families, friends and carers.

• Neil Morrison — Patient and Public Involvement Volunteer, Involvement Steering Group Volunteer, Par-Con Event Volunteer and Support Group Coordinator
• Heather Mortiboys — Involvement Steering Group Volunteer and Parkinson’s researcher
• Ellen Poliakoff — Involvement Steering Group Volunteer and Parkinson’s researcher
• Richard Campbell -Member of the Research Strategy Board and the Dissemination and Communication committee for the PD-MitoQUANT Innovative Medicines Initiative (IMI).
• Werner Remmele — Dundee Research Interest Group Volunteer, Chair of the Special Interest Group for Parkinson’s and Technology and Fife Group Volunteer.
• Alison Williams — Lay Grant Reviewer, Patient and Public Involvement Volunteer and Branch Volunteer.
• Nicola Cooper — Yorkshire and Humber Research Interest Group Volunteer, Patient and Public Involvement Volunteer and Virtual Biotech Involvement Group Volunteer
• Mark Bailey — Research participant and Educator

Follow the links to read more about the winners of our volunteer awards from across the charity’s work — 2021, 2020 and 2019.

What’s on the horizon?

As we move into 2022, our volunteers will continue to play an important role, building on these achievements. There are a few things to look out for — including more opportunities to shape our Virtual Biotech programme that looks to accelerate drug development for Parkinson’s and an ongoing project working with people from underrepresented communities to drive real and lasting change to take steps towards making research more representative of the whole Parkinson’s population.