It’s been another tough year. Especially if you, or someone you love, has Parkinson’s. But we’re learning to live with coronavirus, adapting our vital support services and finding new ways to come together as a community.
Here are the 4 big things we’re most proud of this year, and how you can play your part in 2022 to improve lives and bring us closer to a cure for Parkinson’s.
1. We’re accelerating research breakthroughs
Last year’s hard-hitting Time for Can campaign showed the reality of living with Parkinson’s and celebrated the strength of our wonderful community. We raised more than £500,000 for Parkinson’s research, got 210,000 more people to understand the condition, and gained almost 2,000 new supporters.
But we’re still impatient for a cure, which is why we relaunched our Time for Can campaign in 2021, incorporating new feedback from the Parkinson’s community. The campaign is live now, and we cannot wait to see its full impact.
All the money raised funds our breakthrough research. In 2021, we announced a further £6m into Parkinson's Virtual Biotech projects. We’re also accelerating existing research projects, including our trial to determine whether CBD (cannabidiol) can be used to treat psychosis in Parkinson’s. Watch the video to find out more about our CBD trial.
We also launched our Race Equality in Research project, to challenge the systemic underrepresentation of people from ethnic minorities within UK research. Because if we’re going to create better treatments for everyone, we need to understand how Parkinson’s affects people from all backgrounds. Read more about the Race Equality in Research project.
Time for Can: Clare's story
Clare was diagnosed with Parkinson's in 2016, aged 51.
She knows that there is hope in research. That's why she and her family take part in research trials to drive forward better treatments for Parkinson's. And one day, a cure.
2. We’ve been there for the Parkinson’s community
The coronavirus pandemic has continued to affect people with Parkinson’s. Symptoms worsened during lockdown, and many are still struggling to get face-to-face time with healthcare professionals. Unsurprisingly, we saw the highest ever demand for our advisers. We’ve worked hard to make sure more people can access our support, now and in the future.
We’ve been transforming our information and support service to deliver personalised support to more people with Parkinson’s, family and friends. This year we:
- Built and tested personalised content that learns what information and support an individual needs most.
- Got our first direct referral from the NHS, by building the tools for NHS staff to refer people straight to us from their computer systems during a diagnosis or early appointment.
- Created a space within the forum for friends, families and carers to share experiences.
- Celebrated Polly Cook, who heads up our service transformation work, winning ‘Digital Leader of the Year’.
Many of our 343 local groups moved the support and activities they offer online during 2020. But this year they’ve carefully restarted more than 500 in-person activities as restrictions lifted. Our local groups have worked incredibly hard to adapt their activities, whether by making them accessible online, or giving people the opportunity to meet face to face in a COVID-safe way. Find your local group.
Our First Steps programme also moved online as part of our coronavirus response. The programme supports recently diagnosed people with Parkinson’s and their friends and family members. We’ve decided to keep the programme online, as this means we can reach and help more people, wherever they live in the UK. Find out more about First Steps.
We also supported nearly 200 people, including more than 100 people with urgent needs, with grants for electrical items, respite care, specialist equipment or activities. Find out more about the Parkinson’s UK Grants programme.
3. Record numbers of people took part in our virtual events
Par-Con, our free conference about Parkinson’s research, went virtual this year. Led by our amazing, award-winning volunteers, more than 2,300 people registered for the event. We got some great feedback from our attendees too:
"I liked that it was driven by people with Parkinson's and their interests were at the top of the agenda."
We also hosted our 2021 UK Parkinson's Excellence Network Awards and Conference. It brought together health and social care professionals and the Parkinson’s community. Every 2 years, we come together to showcase best practice and drive up the standards of care for people with Parkinson’s. Find out more about the Excellence Network Awards and Conference.
4. Our community came together to support and inspire each other like never before
On World Parkinson’s Day, our community showed that whatever your story, whatever your experience with Parkinson’s, you’re not alone. Hosted by Parkinson’s activists Dave Clark and Clare Addison, people shared powerful stories about staying connected, as well as expert advice on exercise, research and activism. Catch up on the World Parkinson’s Day event.
To mark the end of Parkinson’s Awareness Month, the Duchess of Gloucester and Mike Tindall shared a heartfelt chat about why it’s so important to find a cure for Parkinson’s. Watch the video of their conversation.
Then there was our partnership with Next, which was driven by two incredible and creative people: Next designer Genna Douglas and internationally renowned artist Alex Echo, who both have Parkinson’s.
The range of T-shirts, tote bags and homeware looked fantastic and were incredibly popular. Plus, 100% of the profits went to Parkinson’s UK. Find out more about our partnership with Next and shop the range.
Throughout the year, our brilliant supporters and campaigners drove real improvements in their local communities. A successful campaign in Lincolnshire saw the addition of 3 new Parkinson’s nurse posts. In Watford, local campaigners convinced the hospital to use our information about medication management in mandatory staff training following a poor experience by a person with Parkinson's.
Our evidence and insights also helped get Opicapone approved for use in Wales. And following reports of issues accessing the COVID-19 vaccine in Scotland, we encouraged the Scottish government to clarify and reissue their guidance on vaccinating people with Parkinson's.
We can’t do what we do without our incredible supporters and your fundraising efforts. Not only did you Walk for Parkinson’s, run the London Marathon and even skydive out of planes for us, your online donations meant we had our best ever year of online fundraising, hitting the £1m mark sooner than we ever have!
Our fundraising efforts were boosted by the Frank Brake Charitable Trust, who generously created the Connect Fund to transform Parkinson’s support. The match fund aimed to raise £1.2m across 2020 and 2021 for Parkinson’s Connect through our Walk for Parkinson’s event series, our September appeal and corporate gifts.
For every £1 you raised, the Connect Fund would match the donation, doubling your impact. In 2020, we successfully raised £400,000. And in 2021, together we raised £800,000, meeting our target! Whether you put in the miles on foot, or gave directly to the fund, thank you. You’re helping us be there for everyone. From day one.
We’d also like to give a special shout out to our Chair Gary Shaughnessy who’s taken on some tough challenges this year to raise money for Parkinson’s UK. These included abseiling down the Spinnaker Tower, making a world record attempt for 3-legged running, and completing 4 marathons in 4 weeks. Read more about Gary’s fundraising efforts.
It may have been another hard year, but the Parkinson’s community came together to support and inspire each other like never before. We’re incredibly excited for what 2022 will bring, and we hope you continue to support us. Because we can’t do it without you.
You can help fund the next breakthrough
We need better treatments for Parkinson’s now. Not in 10 years. Not in 20 years. Now.
We’re funding research that can give hope for the future. But we can’t fund this research without you.