It’s been a massive year for the Parkinson’s community, from the awareness-raising World Parkinson’s Day 2024 and innovative gender-specific studies to the epic sporting challenges undertaken by those living with Parkinson’s.
Here are 10 of our favourite and most-read stories from Parkinson’s Life in 2024
1. A new staging framework for Parkinson’s
In January a groundbreaking new Parkinson’s framework was published in a paper in The Lancet, after being developed by the Critical Path for Parkinson’s Consortium (CPP).
Hailed as a “major step” in Parkinson’s research, the new framework aims to help define and stage Parkinson’s based on biology, rather than symptoms. Using two medical tests in clinical trials – which you can read more about here – the proposal looks to help identify Parkinson’s in people even before symptoms appear.
Similar to the Predict-PD research project – which this year surpassed its goal to recruit 10,000 participants – being able to begin clinical trials in people with Parkinson’s who aren’t even showing physical symptoms is part of the ongoing effort to develop the scientific knowledge to help identity, treat and ultimately cure Parkinson’s.
2. Firsts for women in Parkinson’s
2024 saw the launch of innovative studies and initiatives championing tailored research into the ways Parkinson’s uniquely affects women. In March we spoke with Richelle Flanagan, a woman with Parkinson’s and inventor of the Parkinson’s self-care app My Moves Matter, who collaborated on Ireland’s University College Cork’s study investigating hormonal fluctuation in women with Parkinson’s.
More recently, we covered the news of a landmark global initiative, Gender Equitable Medicines for Parkinson’s Disease, working to advance actionable research on how Parkinson’s affects women. All positive steps towards a more equitable approach to detection, disease management and therapies for those living with Parkinson’s.
3. A new website for Parkinson’s Europe
March saw the launch of our new and improved Parkinson’s Europe website. From an easy-to-navigate homepage to exclusive member area for Parkinson’s Europe Member Organisations to access and share resources, everything was designed to help people with Parkinson’s, healthcare professionals and Parkinson’s organisations find the information they need easily.
Parkinson’s Life – Parkinson’s Europe’s online magazine – was added to the main website and continues to be a go-to hub for the Parkinson’s community. The revamped website also saw the inclusion of an interactive Parkinson’s map, where users can discover local Parkinson’s groups and hear about important events.
4. World Parkinson’s Day 2024
Across the world, the Parkinson’s community came together to make World Parkinson’s Day 2024 one to remember. Global landmarks were lit up to mark the occasion and raise awareness, Parkinson’s Europe launched their Summer of Sport and the podcast legends The Movers and Shakers presented their ‘Parky Charter’ to the UK Prime Minister at 10 Downing Street. It was an impressive world-wide effort to raise funds and awareness on all things Parkinson’s related.
5. National Plan to End Parkinson’s Act in the US
June saw the National Plan to End Parkinson’s Act passed unanimously by the US Senate. This historic bill is the USA’s first-ever federal legislation dedicated to ending Parkinson’s disease, including things like increasing research funding, improving early diagnosis, and enhancing public awareness of Parkinson’s.
The news was welcomed enthusiastically by the Parkinson’s community across America, leaving the question: how can Europe learn from the National Plan to End Parkinson’s Act, and bring about something similar for the European Parkinson’s community?
6. A person with Parkinson’s was an Olympic torch-bearer
We all know that representation matters, especially when the eyes of the world are watching. In May this year, 41-year-old Anthony Desjardins – diagnosed with Parkinson’s in 2021 – was chosen to carry the Paris 2024 Olympic Flame through his home city of Montpellier, France.
With over 10,000 followers, Anthony uses his social media accounts to talk about the benefits of sports and exercise for Parkinson’s.
Describing representing Parkinson’s on Paris 2024’s world stage as “an honour” Anthony said: “ I’m as happy to carry the torch for myself as I am to carry it for the entire Parkinson’s community.”
7. People with Parkinson’s did some amazing sporting challenges
Ready to make 2025 the year you get more active? Take inspiration from Parkinson’s Europe Summer of Sport, and these people with Parkinson’s who are pushing themselves to their limits by taking on incredible exercise challenges.
From the World’s Toughest Row race to epic 450km bike rides, we spoke to 12 men and women who’ve really gone the extra mile for Parkinson’s. Just four days after World Parkinson’s Day 2024, Frenchmen Bertrand Delhom became the first person with Parkinson’s to sail around the world and we shared his story here.
8. Beech Band invention
Diagnosed with Young-Onset Parkinson’s just last year, 51-year-old Carl Beech has already made waves in the Parkinson’s community with the Beech Band – a clever gadget to help control speech issues. The wearable wrist band device replicates the tapping technique he used to help him with his Parkinson’s related stammer.
“I found out that not only a beat but tapping myself had a profound impact,” Carl explained. “I realised the comforting and distracting nature of it took my mind off the problem.” He set about designing an accessible device that can be used by those with fine motor control issues, and the Beech Band was born. Now in the manufacturing process, Carl hopes the first batch of Beech Bands will be available to buy early 2025. Watch this space!
9. We helped launch a new Parkinson’s book
Artist Barbara Salsberg Mathews was inspired to use her talents to give a voice to the Parkinson’s community this year. Using descriptions written by people with Parkinson’s about what it’s like to live with the condition, Barbara has transformed their words into emotive illustrations for a new e-book, What Parkinson’s Feels Like.
Barbara hopes the e-book will build empathy and raise awareness about Parkinson’s. She says: “Reading these descriptions reminded me that I’m not alone. I could never have created this booklet without the descriptions of all those who shared their lived experiences with Parkinson’s.”
You can download the book for free here in either English, Spanish, French, Italian, German, Ukrainian or Russian. There’s also the option to donate to one of three Parkinson’s charities, including Parkinson’s Europe.
10. Improving care for people with advanced Parkinson’s
At the start of the year Parkinson’s Europe and AbbVie held a roundtable for global experts in the field to talk about how to improve care for people in the advanced stages of Parkinson’s.
Inadequate resources and availability of expert staff, the crucial role Parkinson’s nurses play in improving care, and how those living with advanced Parkinson’s in rural areas aren’t receiving the same level of care as those living in cities, were all topics that featured highly in our roundtable discussions. To drive change, we’re launching a petition for people to pledge to our resulting “Call to Action”, aimed at European policymakers.
What was your highlight of 2024? Share with us on your social media platform of choice (search “Parkinson’s Europe” to find us).
