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New women with Parkinson’s illustrations unveiled for International Women’s Day

08 March 2025 By Christy McGhee
News barbara salsberg mathewsDiversity and Parkinson'sInternational Women's DayWomen and Parkinson's

The Parkinson’s community is filled with strong women who defy the paths predicted for them and blaze their own trail, challenges and all. Canadian artist with Parkinson’s Barbara Salsberg Mathews is one such woman, from pursuing her own diagnosis to using her considerable creative skills to show the true – and varied – nature of the Parkinson’s experience. Excitingly, her latest works are being launched just in time to mark International Women’s Day on 8 March.

Last year, we shared the e-book Barbara created to capture the essence of what living with Parkinson’s is like, ‘What Parkinson’s Feels Like: a collection of illustrations inspired by descriptions written by people with Parkinson’s around the globe’. The response from the Parkinson’s community was hugely successful – more than 1,000 copies of the book were downloaded, with more than €3,000 in donations raised for three Parkinson’s charities.

Barbara’s newest project takes the fight to paint a true picture of the Parkinson’s community one step further. For International Women’s Day 2025, she is releasing a set of new illustrations to show the five stages of Parkinson’s. While the familiar image of an elderly white man is often found everywhere from healthcare settings to Google image searches for Parkinson’s, Barbara’s updated pictures have a key difference. Each set shows a diverse range of young women from various cultures, communities and backgrounds.

Raising awareness of women and Parkinson’s

Barbara, who was diagnosed with Parkinson’s in 2020, hopes the fresh illustrations will raise vital awareness of the fact that Parkinson’s affects women almost as frequently as men. They are also intended to help women with the condition to feel more fairly represented across the globe.

The campaign is supported by a range of Parkinson’s organisations around the world, including Parkinson’s Europe, Parkinson Canada, The Michael J Fox Foundation, and the Women’s Parkinson’s Project.

Featuring a single body shape and outfit, the six new illustrations feature women from a range of communities, including a blonde white woman, an East Asian woman, and a woman wearing a hijab. Barbara intends to expand the collection with illustrations of younger men with Young Onset Parkinson’s next year.

Barbara Salsberg Mathews' new illustrations show a variety of women with Parkinson's

In a bid to support and amplify Barbara’s efforts, Parkinson’s Europe will feature the illustrations in its database of Resources for Healthcare Professionals. It is hoped that they will be used to help women feel represented during healthcare appointments. Parkinson’s Europe Director of Communications Laura Vickers-Green says: “A lot of people still see Parkinson’s as a condition which only affects older, white men, which simply isn’t true. Part of the Awareness and Visibility pillar of our new strategy is to help the wider public see the realities of Parkinson’s, and we hope these illustrations will help by banishing unhelpful stereotypes. And the idea that these illustrations might be used to help women with Parkinson’s feel more seen and represented during their healthcare appointments is exactly what our Empowerment strategy pillar is all about.”

Parkinson’s Life caught up with Barabara to find out more about the inspiration behind the project, and how she hopes it will bring about change.

Canadian artist with Parkinson’s Barbara Salsberg Mathews

What inspired you to create these illustrations?

“I got the idea to create these illustrations from following the Women’s Parkinson Project. Also from the length of time it took me to get diagnosed with Parkinson’s. Over a year and a half of repeatedly asking my doctor for help with my hand tremor, and being told I was ‘just aging’, I was finally sent to a neurologist. Two years after first noticing my tremor, I was finally diagnosed with Parkinson’s. I wonder if I were a man, maybe this timeline would have been shorter?
“I figured it was time to represent women as also having Parkinson’s. So I went about re-illustrating the five stages of Parkinson’s with women of different races around the globe.”

Please tell us about your research, and the creative process for this project

“I wanted women of various ethnicities to see ourselves reflected in these illustrations, but I also knew my Parkinson’s-affected dominant drawing hand had only a few hours of productivity a day.

“So I narrowed down the task to include six different faces and one body size and shape, wearing the same clothing to illustrate the five stages of Parkinson’s. This helped me both manage the demands of these drawings and keep viewers focused on the progression that Parkinson’s can have over time. Various coloured clothing and various body sizes and shapes might distract some viewers’ focus away from the different stages of the disease.

Barbara Salsberg Mathews' new illustrations show a variety of women with Parkinson's

“I began my illustrations by first gathering research as to how the five stages of Parkinson’s were visually represented. Next, I did pencil sketches, added watercolour and ink, and then for the ‘finesse’ worked with PhotoShop.”

You have seen a very positive, and enthusiastic response, from other people you reached out to for this campaign – did that surprise you? How did it feel to see such an appetite for this project?

“This positive response suggested I was onto something whose time has come. Women with Parkinson’s seem to be largely unseen in the medical world. The enthusiastic response from organisations worldwide, such as Parkinson Canada, Parkinson’s Europe, Parkinson’s UK, Women’s Parkinson’s Project, Critical Path Institute, and the Michael J Fox Foundation, was most encouraging. Especially in helping me override the times when my dominant ‘parkie’ drawing hand ran out of gas.
“Releasing these drawings in time for International Women’s Day did not give me a lot of time. But the encouragement of these groups have helped me get a second wind and complete these drawings in a timely fashion.”

You were diagnosed in 2020. To what extent do you feel representation of Parkinson’s, and awareness of the condition, has changed since then? Is there room for improved understanding of how Parkinson’s affects women, and how to offer women better care?

“I’ve noticed more and more organisations and online groups discussing the need for more medical research on women with Parkinson’s. We are getting organised and speaking out about this topic.

“There is definitely room for improved understanding of how Parkinson’s impacts women and how to offer us better care. It begins with awareness that, yes, women get Parkinson’s too. That is why I encourage not just people with Parkinson’s to freely download my illustrations, but also clinicians. Seeing women going through the different stages of Parkinson’s will hopefully educate, inform and challenge existing stereotypes as to who is touched by Parkinson’s.”

Do you have any upcoming creative projects?

“I am unsure how much longer my drawing hand will be able to create illustrations and other artworks. I only have a certain number of hours a day that I can be productive, because most of it is sapped by Parkinson’s. So I purposely park my thinking and actions on where I can leave a positive mark. And hopefully touch others with kindness along the way. That is why I created the book with Parkinson’s Europe, ‘What Parkinson’s Feels Like’ and these new illustrations depicting the five stages of Parkinson’s for women.

“I am very excited about my upcoming project — a series of free self-study therapeutic mime videos, produced with the support of Parkinson Canada. As a former professional mime artist, I apply mime techniques to help me move more normally. So I have designed a therapeutic mime programme for my Parkinson’s sisters and brothers. These videos will be available for free this April on my Mime Over Mind YouTube channel.”

For more information about Barbara and her work, visit her website.

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Parkinson’s cases will double to 25 million by 2050, BMJ study says

06 March 2025 Laura Vickers-Green
News Parkinson's prevalenceResearch

A new modelling study published today in the BMJ (British Medical Journal) suggests there will be 25 million people living with Parkinson’s worldwide by 2050, more than doubling the current global prevalence of Parkinson’s.

Researchers from Capital Medical University in Beijing, China, conducted this latest modelling study using data from the 2021 Global Burden of Disease Study to predict the prevalence of Parkinson’s in 195 countries and territories from 2022 to 2050.

The findings suggest the number of people living with the condition in 2050 will be 25.2 million, a 112% increase compared to 2021.

The study also looked at the the factors driving changes in Parkinson’s cases, concluding this sharp rise will largely be due to an ageing population.

Projected age standardised prevalence (per 100 000) of Parkinson’s disease in 2050, by country and territory for both sexes combined

Which countries will have the most Parkinson’s cases?

Researchers said Parkinson’s will become more common across the world, but countries with poorer socioeconomic status, as well as those with the largest ageing populations, will see the biggest increase in cases. The study also noted that risk factors included environmental agents (like air pollution and pesticides), climate change, unhealthy lifestyle, metabolic diseases, and dietary factors.

East Asia will see the highest number of cases – 10.9 million – with China and Japan most affected, whereas the largest increase in cases will be in western Sub-Saharan Africa, where people are generally living longer than before.

In Europe, cases are expected to rise by 50% in Western Europe, and by 28% in Central and Eastern Europe.

The European countries with the highest prevalence rates won’t differ much to the most-affected countries now – Germany, Italy, France, Spain and the UK – but the numbers of cases will of course see a sharp rise, according to the modelling study.

Germany, for instance, is expected to have 574,000 cases in 2050 (up from 414,000 in the 2021 Global Burden of Disease Study), whereas the UK is expected to have 307,000 cases (vs. 199,000), and France and Spain will both top 350,000 Parkinson’s cases (up from 241,000 and 200,000, respectively).

One European anomaly was Italy: the modelling study predicts the number of Parkinson’s cases will actually fall to 177,000 in 2050, down from 190,000 in 2021.

Estimated top 10 countries with highest number of Parkinson’s disease (PD) cases in 1990, 2021, 2030, 2040, and 2050 globally. Corresponding boxes present number of PD cases in this country and their proportion among global PD patients, as well as global count

What does this study mean?

We already know that Parkinson’s is the fastest-growing neurological condition in the world, and similar predictions about prevalence numbers have been around for a while, but this study is an important reminder that Parkinson’s is growing at an alarming rate, and will also go on to affect some countries’ healthcare systems much more than others.

“By 2050 Parkinson’s disease will have become a greater public health challenge for patients, their families, care givers, communities, and society,” the study authors concluded, adding a suggestion that this study “could serve as an aid in promoting health research, informing policy decisions, and allocating resources.”

This is something our Strategic Director, Amelia Hursey, agrees with. Speaking to EuroNews, Amelia said:

“It just shows that it absolutely needs to be addressed now, because there is no way that any of the global health services can cope with that level of demand from one specific condition.”

Parkinson’s UK Director of Research, David Dexter, added:

“This very welcome study reminds us that Parkinson’s is growing quickly across the world. Until we find a cure, it’s vital that people with Parkinson’s, regardless of their location, socioeconomic group or race, have access to research opportunities, good quality care and support that enables them to live well with the condition.”

Find out more key Parkinson’s statistics.

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8 tips to help with freezing for people with Parkinson’s

04 March 2025 By Josefa Domingos  Sarah Dawson 
Advice freezingphysiotherapytips

Freezing in the home or in busy public places can be upsetting, embarrassing, or even frightening. The anxiety that comes with this symptom of Parkinson’s may make you feel tempted to avoid situations that are more likely to make you freeze – whether that’s crowded rooms, narrow walkways or something else.

However, we understand that avoiding these situations is not always practical. It is important to know that freezing does not have to stop you from enjoying your social life or the activities you love. There is lots you can do to prevent or overcome freezing.

Physiotherapist (and President of Parkinson’s Europe) Josefa Domingos – who has spent decades specialising in physiotherapy for Parkinson’s – has approved the following advice. You can also read more about freezing, and why it happens, here.

Here are our top tips to help with freezing with Parkinson’s:

1. Stop, don’t force it

If you think you’re about to freeze, stop moving. This gives you time to think about your balance. Try to stay calm, take a deep breath and don’t rush. Think about your next movement and plan out how you’re going to carry it out before you actually move.

2. Keep a diary

Understanding the triggers of freezing is a powerful way to help take back some control. Keep a diary to record the timing, location, activity being performed, duration and frequency of freezing episodes. Also note down the timing and dosage of each medication. This can help your doctor look at adjusting medication to try and overcome freezing problems.

3. Optimise medications & manage “Off” periods

Take medications on time to prevent motor fluctuations and improve “off” freezing. Discuss with your doctor about adjusting Parkinson’s medication to reduce freezing. If freezing worsens, deep brain stimulation (DBS) may be an option to consider.

4. Use visual cues to help when freezing with Parkinson’s

For some people with Parkinson’s, visual cues can be effective at managing freezing. Stick a line of tape across a threshold or on the edges of steps – this can act as a prompt to step over and reduce the risk of freezing. Patterned carpets or cracks between tiles can also act as visual clues. You may even find it useful to use a small torch or laser pointer to project onto the floor ahead as your cue.

5. Follow the beat (auditory cues)

A steady beat, whether from counting out loud, a metronome or a piece of music, can help prompt you to lift your feet and step. Decide which foot you want to step forward with. Then, either silently or out loud, say ‘one, two, three, step’ or ‘left, right, left, right’ to cue the feet to walk. You may like to try closing your eyes to take the first step (as long as it’s safe), then open your eyes to continue. A trigger word, like ‘go’, ‘step’ or ‘march’ helps to restart your walking if you do freeze. There are mini metronomes, or similar, which can be clipped onto your clothing – a physiotherapist or occupational therapist should be able to suggest something suitable.

6. Use your imagination (mental imagery)

Rehearse certain movements in your mind, focusing hard on the sequence. For example:
– Concentrate on putting your heel down firmly on the ground as your foot makes contact
– Imagine yourself walking smoothly before starting to move or
– Mentally picture stepping over an object when freezing starts.
This technique is called an attentional strategy, and it’s a valuable tool to help with freezing. Attentional strategies require concentration – thinking about moving and rehearsing a sequence uses the same part of your brain as when you actually move.

7. The weight shift method for freezing with Parkinson’s

When you freeze, gently shift your weight onto the other leg, rather than trying to move forward. This technique will allow you to move forward on your other leg. Try gently rocking your head and shoulders from side to side to help achieve this weight shift.
Other strategies may include taking a step sideways and then forward. Taking a small step back and then forward with the same foot might also be helpful. Try marching in place for a few steps before moving forward. Also try to avoid sudden direction changes – turn slowly and deliberately. Turn using a U-shape, rather than pivoting sharply.

8. Touch

Using touch as a cue to unblock freezing can be helpful for some people. For example, lightly tap your leg to signal when to step, or have a caregiver touch your back when freezing occurs. This video has lots of helpful information on how touching can be effective when dealing with freezing.

Find out more about freezing in Parkinson’s

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“People don’t talk about it”: new film explores impulse control disorders in Parkinson’s

German neurologist Dr Ines Debove and filmmaker Bettina Rotzetter discuss their latest film, Beyond Impulse, about impulse control disorders in people with Parkinson’s
26 February 2025 Verity Willcocks
Stories filmGermanyimpulse control disorders
Image credit: Bettina Rotzetter and Fernwerk Films

Over the six years that German neurologist Dr Ines Debove and filmmaker Bettina Rotzetter have been making films featuring people with Parkinson’s, they have not shied away from difficult topics. Their sixth and most recent film, Beyond Impulse, released in December 2024, focuses on impulse control disorders.

Ines, who is Attending Physician at the Centre for Parkinson’s and Movement Disorders, at Inselspital, Bern, Switzerland, chose the subject because she wanted to explore impulse control disorders in people with Parkinson’s in greater depth and to encourage more dialogue about the subject.

“I think it’s really a very important topic, because people don’t talk about it,” says Ines. “[Through this film] we can encourage the community by showing them that there is no shame in talking about it and that people need to talk [to their neurologist] to receive help.”

Explaining impulse control disorders and Parkinson’s on film

For those taking dopamine agonist medication, developing an impulse control disorder can be a common side effect. It can manifest in them becoming almost obsessed by a certain activity – which can range from the relatively harmless, such as a compulsion to draw or paint, to the potentially harmful, such as hypersexuality or gambling, which can have a devastating and wide-reaching effect on a person’s life from all perspectives – from relationships to financial stability.

One of the experts interviewed for Beyond Impulse, Professor Daniel Weintraub, professor of Psychiatry at the University of Pennsylvania, explains the damaging impact of impulse control disorders in this new Parkinson’s film: “It’s partly the repetitive nature of these behaviours, that people seem to have trouble controlling them, so even if it’s a behaviour that in and of itself isn’t so harmful, let’s say, somebody engaging in a new hobby, it’s the fact that the person may be engaging in this behaviour all day and all night long – that then becomes disruptive to their life and to the life of the people around them.”

Prof Weintraub also highlights another problematic aspect of impulse control disorders – that people affected often have “a loss of insight”. “People may not recognise that it’s having an impact on others, and either for that reason or just for neurobiological reasons, they’re not able to control the behaviours,” he says.

Filmmaker Bettina Rotzetter and German neurologist Dr Ines Debove

Living with an impulse control disorder

In the film we meet people with Parkinson’s with various impulse control disorders. Among them are an anonymous lady who has experienced hypersexuality. Also featured is Samantha, a teacher and mother who describes her intense creative urges to paint as the “silver lining” alongside the emotional and cognitive changes she has noticed from taking her medication. Although she has become more creative, she reveals that planning and organising her life has become much harder.

Then there’s Emma, who no longer has an impulse control disorder, but remembers what it was like: “I felt like Superwoman. I could go on and on the whole night and work the whole night and still get up in the morning and feel super.”

Bettina explains why they wanted to include her in the film: “She was already in the reflection phase, so we felt she was very valuable to the audience, because she is now looking back, thinking, oh, what I did back then was kind of crazy.”

In addition, Gottfried and his wife and carer Helga give an insight into how having an impulse control disorder affects a person’s loved ones. Gottfried experienced a surge in creativity and began crafting beautiful items from wood and metal, but he got so immersed in it that he couldn’t stop. Then, when his dopamine levels were low, he would become incredibly depressed and fearful, and these extreme mood swings put his relationship with Helga under strain.

“I felt heard”: this Parkinson’s film shows it’s good to talk

Still from Parkinson's film Beyond Impulse
Image credit: Bettina Rotzetter and Fernwerk Films

Ines and Bettina have found that taking part in the film has had a beneficial impact on the participants’ lives, often encouraging them to reflect more on their situation.

Bettina cites Helga as an example: “She said, ‘Look, I felt heard. And it was a very important process for me because I could basically voice what I was going through.’”

Bettina continues: “Helga was very grateful and also reflective – even though she was talking about the negative emotions she went through with [Gottfried]. It brought them closer together, because they were reflecting on a very difficult phase in their lives, and despite this difficult period, they somehow found a connection again.”

Diagnosing and treating people with impulse control disorders

Still from Parkinson's film Beyond Impulse
Image credit: Bettina Rotzetter and Fernwerk Films

The film also discusses the challenge neurologists face when trying to help people who are living with an impulse control disorder. Ines says that prevention is best: regular monitoring of those taking Parkinson’s medication is essential, and that people with Parkinson’s need to be informed of the risks. But, she adds, this doesn’t always stop someone from developing an impulse control disorder: “It still happens, despite the fact they are informed.”

Part of the problem is that some people are not aware that their behaviour has changed – or they are enjoying the boost in energy or creativity they experience and want to keep feeling this way. Others, if they are aware, feel shame about admitting to some behaviours. For these reasons, people can be reluctant to tell their neurologist what is going on.

Ines says in the film: “In their impulse control disorder, they are much more productive, they can do in three hours what other people can do in six or eight hours, so they feel really powerful during these phases, and then we as doctors come there as a party pooper and say: ‘We have to now lower the dosage of the dopamine agonist’ and they are not happy.”

Detecting changed sleep patterns can alert neurologists that someone might have a problem. “If they don’t get enough sleep, we should be very much aware,” says Ines. “And sleep is not a shame-related topic. So, if we are smart and ask, ‘OK, look, when do you go to sleep? When do you get up? And the patient tells you, ‘Ah, I go to sleep at midnight, and I get up at three or four in the morning,’ that is not very good.”

In the end, explains Ines, neurologists have to be brutally honest with the person with Parkinson’s about the consequences of not addressing the impulse control disorder by adjusting their medication.

“I tell them, ‘Look, it doesn’t help you if you lie to me and say, yeah, I’m doing it, and the next time I realise nothing changed.’ That’s what I like very much about Professor Kay Redfield Jamison [who appears in the film], because she said you have to convince somebody what will happen if you don’t [tell your neurologist about this and have the medication reduced]: you’re going to jail, you’re going to lose money, you’re going to lose your family,” says Ines.

New Parkinson’s film Beyond Impulse is available to watch on YouTube and has subtitles in five different languages.

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Call for new Parkinson’s stories after successful ‘Parkinson’s Project’ documentary

22 February 2025 By Christy McGhee
News climbingfilm

A documentary film maker is asking people affected by Parkinson’s to share their stories in a series of new films, following the success of the ‘Parkinson’s Project‘ documentary.

The original project, ‘The Parkinson’s Project documentary: climbing with Parkinson’s disease’, follows the challenges of climber, teacher, and person with Parkinson’s Chris Hamper.

The 53-minute documentary was shown at more than 20 screenings across Norway and the UK. It has also been accepted into several film festivals. The film was intended to raise awareness and understanding, and to add to conversations about how Parkinson’s is seen in society. Its success has led to plans for two further episodes, featuring more Parkinson’s stories.

“We received a huge amount of incredibly positive feedback from the Parkinson’s community,” says Sheffield, UK-based filmmaker Jess James. “The film has connected with people on many levels.”

Parkinson's Project raises awareness of living with Parkinson's

Many people with Parkinson’s appreciated the “truthful and open” depiction of what it is like to live with Parkinson’s day to day, she says. Seeing Chris maintain his focus on larger life goals, despite the challenges of Parkinson’s, has also inspired people.

“A number of people at the screenings say that seeing the documentary has given them much more confidence to be open about their condition, and not let it define them.” Jess adds.

Sharing more stories about Parkinson’s

Jess is now looking to produce more inspirational human-led stories of how people move past the limitations of Parkinson’s. “We strongly believe that the many more stories to tell in this space will further our original aims of shining an informative and inspirational light on Parkinson’s,” she says.

The team is calling for people with Parkinson’s, partners, health workers and researchers to share their stories through an online form.

“We are not only looking for people to be subjects of a film, but for all insights into the many areas that make up the world of Parkinson’s. We will be sure to read everyone’s input personally and will get in touch with some people for further discussion.”

If you would like to watch the full film it is available on demand for a small fee here.

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Yuvedo Foundation: “Our holistic approach unites science with advocacy, sport, art and music”

Parkinson’s Europe speaks to Dr. Jörg Karenfort, cofounder of German Parkinson’s advocacy organisation the YUVEDO Foundation, which is fighting the condition with science and culture
17 February 2025 Verity Willcocks
Stories charityGermany
Yuvedo Foundation co-founders Jens Greve and Dr. Jörg Karenfort with YUVEDO director Uwe Radelof

It may be small in size, but its impact is immense: the Berlin-based YUVEDO Foundation has rapidly become a driving force in the fight against Parkinson’s. Since its establishment in 2019 by Dr. Jörg Karenfort and Jens Greve – both diagnosed with the disease in 2013 – the foundation has built a reputation for combining science, advocacy and cultural engagement in its pursuit of a cure.

Dr. Karenfort, a leading business lawyer, is no stranger to tackling complex challenges. He brings the same strategic mindset that has defined his legal career to YUVEDO, working tirelessly to shift the paradigm of Parkinson’s treatment from symptom management to potential cure.

The Yuvedo Foundation: uniting science with culture

“We take a holistic approach that unites science with advocacy, sports, art and music,” explains Dr. Karenfort, who juggles his role as CEO with his legal career. More than just a research-driven organisation, YUVEDO provides platforms for people with Parkinson’s, creating events that range from scientific discussions to artistic expression.

Among its accomplishments, YUVEDO has organised two leadership workshops, formulated a roadmap towards a cure, and engaged in advocacy both in Berlin and Brussels. These efforts have drawn the attention of German Minister of Health Dr. Karl Lauterbach, who praised the foundation’s work on World Parkinson’s Day 2024, stating: “This is a disease, but also a challenge – one that can be overcome, as the example of Dr. Jörg Karenfort shows.”

The foundation has also taken its mission on the road – literally. In recent years, YUVEDO has organised major cycling tours, including routes from Cologne to Baden-Baden and from Berlin to Brussels, designed to raise awareness and funds. In 2021, it hosted the ITTF World Parkinson’s Table Tennis Championships in Berlin, highlighting the therapeutic power of sport.

Meanwhile, its creative projects – such as the ‘Little Victories’ song by German singer Laura Korinth, featuring lyrics by Karenfort – have used the arts to give a voice to the Parkinson’s community.

Fighting for a cure

YUVEDO is also working hard to help find better treatments for Parkinson’s – and a cure. The foundation is at the forefront of exploring novel treatment strategies, including the potential role of the gut microbiome in neurodegenerative diseases.

As part of this effort, the foundation has partnered with leading researchers, including Professor Aiden Haghikia from the University of Magdeburg, and is advocating for increased funding for promising therapies.

Dr. Karenfort is also deeply involved in a groundbreaking, EU-funded research initiative in collaboration with Maastricht University, which is investigating whether existing drugs used for other conditions – such as diabetes or leukemia – could be repurposed to treat Parkinson’s.

Prof. Dr. Karl Lauterbach, German Minister of Health, and Dr. Jörg Karenfort
Prof. Dr. Karl Lauterbach, German Minister of Health, and Dr. Jörg Karenfort

The Yuvedo Foundation in 2025: BerlinCulture Brain Project

For 2025, YUVEDO’s focus shifts to the intersection of culture and neuroscience. “We want to initiate scientific studies exploring whether cultural activities can help preserve brain health and mitigate Parkinson’s symptoms,” says Dr. Karenfort.

Called the BerlinCulture Brain Project, the plan involves launching three studies in collaboration with prominent researchers, examining the role of music, visual arts and storytelling in managing the disease.

The results won’t just be confined to academia. Once the studies are complete, the foundation envisions a travelling exhibition featuring artwork, poetry and stories created by people with Parkinson’s, ensuring that the insights gained are shared with the broader public. A musical element will likely be incorporated as well.

Other upcoming plans include another cross-border cycling tour from Germany to Luxembourg and France, as well as a book featuring poetry and song lyrics written by people with Parkinson’s. Dr. Karenfort’s own lyrics from ‘Little Victories’ will feature in the collection, reinforcing the foundation’s message of resilience and hope.

“We receive letters thanking us”

For Dr. Karenfort, the fight against Parkinson’s is deeply personal. “We receive letters – sometimes handwritten, pages long – from people with Parkinson’s or their families, thanking us for giving them hope. That’s what drives me to work harder,” he says.

The Berlin-based organisation has proved that passion, science and activism can combine to create real impact. If YUVEDO’s ambitious plans come to fruition, the fight against Parkinson’s may not just be about managing symptoms – but finding a cure.

Find out more at the Yuvedo Foundation website or explore our other Member Organisations

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Raising awareness of Parkinson’s: why the EU needs to start listening

13 February 2025 By Christy McGhee
Insights raising awarenessstrategy

In our final article in this series exploring the three central strands of Parkinson’s Europe’s new strategy, we look at the Awareness and Visibility pillar. Our work here will include shining a spotlight on the challenges facing the European Parkinson’s community, and harnessing the power of raising a united voice.

Uncovering the biggest issues around Parkinson’s in Europe today

It is no secret that the European Parkinson’s community faces a number of challenges. We know Parkinson’s is the fastest-growing neurological disorder in the world. Yet people with Parkinson’s continue to experience issues such as gaining access to medication, alongside living with the everyday impact of the condition. Often beneath the radar of the general public.

It is therefore one of our strategy’s core goals to use the voice of Parkinson’s Europe, and the Parkinson’s community, to place both the condition and its challenges in the spotlight.

Parkinson’s Europe’s Strategic Director Amelia Hursey says: “We want more people to be aware of the everyday life challenges people overcome, so the wider community can understand it better.”

Raising awareness of these issues is about more than improving general understanding. It is also about helping make decision makers aware of the work that needs to be done to improve care.

“As people progress through Parkinson’s, their medical care needs become more complicated. That is not necessarily being fully supported or achieved by healthcare systems as it stands. So raising awareness could help change that,” Amelia explains. “For the European Parkinson’s community, our goal is to reach a critical mass of people to push for better awareness by decision makers.”

Connecting people to the Parkinson’s community to raise awareness

Widening our communications reach will be a huge part of our plans to make Parkinson’s more visible, including our website, social media reach, and targeted campaigns.

Parkinson’s Europe Director of Communications Laura Vickers-Green says: “Part of raising awareness is making sure we are amplifying the voices of people living with Parkinson’s, rather than speaking for them.

We work with people across Europe to share their stories in podcasts, videos, articles, and advocacy campaigns to raise the profile of Parkinson’s, and show policymakers what people with Parkinson’s truly need to improve their lives.”

Being engaged on social media such as Instagram and Facebook, as well as newer platforms such as Bluesky and Threads allows us to both listen to a diverse range of voices from the Parkinson’s community, and also raise those voices up.

Laura explains: “It is important to remember the ‘social’ part of social media – our presence on these platforms allows us to connect with our community on a daily basis, and collaborate on far-reaching projects. For example, we’re currently working with a range of organisations and individuals on a really meaningful International Women’s Day collaboration. It work will raise awareness but also improve healthcare experiences for women with Parkinson’s. The power of social media is what helps us spread this message.”

Understand, engage, take action

As work from the three pillars links together, we will also be making the information gathered in our data and innovation work visible to stakeholders so they can better understand the impact of Parkinson’s.
Amelia explains: “If policy makers better understand, they are more likely to engage with us. Then we can help them address the problems experienced by people with Parkinson’s using European healthcare systems.”

Connection is crucial to amplifying the Parkinson’s community’s calls for positive change. It is also a challenge in itself.

“At the moment, there are these hubs and pockets of connection across Europe. But they are separate from one another, and so not enough noise is being made. If we can bring them together, our message becomes much harder to ignore,” says Amelia. “Connecting people with the world of Parkinson’s sounds simple, but is actually complicated because people are busy. However, we need more people to identify with and understand what is going on and that it is important to be involved.”

Reaching the decision makers who can bring about real and tangible change

We have also expanded our team to support our more strategic approach to raising awareness. Parkinson’s Europe’s new Advocacy & Campaigns manager will bring targeted skills to our strategy.

“They will lead the charge on the specific activities we do in this area, bringing expertise to make sure our advocacy activities are as impactful as possible,” Amelia says.

This combination of specialist skills and a strategic approach is essential to effecting actual change, she argues. “When it comes to raising the visibility of Parkinson’s, you need something meaningful to say to the audience – i.e. key opinion leaders and decision makers like MEPs or health commissioners. Your message needs to be worthwhile so they want to listen and understand. Because if you make a bad first impression, they are unlikely to listen to you again. We must get this right.”

European flags in front of the Berlaymont building, headquarters of the European commission in Brussels.

We will also be taking every opportunity to raise the issues surrounding Parkinson’s at European parliament level, helped by our partnerships with other organisations and stakeholders such as EPF and EFNA.

For example, as part of our work with AbbVie, Amelia will be speaking at the “Europe’s leading role in healthcare: strategies for workforce, chronic diseases, and innovation” working group in March. The event, run by The Parliament magazine and AbbVie, will be hosted by MEP Sokol (EPP, Croatia) at the European Parliament in Brussels.

“Continuing our partnerships with EPF, EFNA and the EAN is another thing we are doing to raise awareness, and we are aiming to do more,” says Amelia. “This also includes working with the World Parkinson Coalition, and collaborating with the Michael J Fox Foundation. Making sure the mainland European voice is as loud as the US and British voices is important.”

Expanded volunteer network to share the message

Creating volunteer opportunities and growing our Engagement Network, will also play a key part. After a successful first year, we plan to expand the network in 2025, growing both the number of members and opportunities we share.

“A strong volunteer base is really key to underpinning all our strategic work,” says Amelia. “We want to ensure an even more strategic way of listening to and embedding the European Parkinson’s community’s voice in our work.”

Creating more volunteer roles that tie in with our strategy, and expanding the Engagement Network membership, will be key to this aim.

Hope for a better future

In keeping with our belief that a united community is strongest, our Awareness & Visibility pillar will work best by bringing people together.

Amelia says: “The power of increasing people’s knowledge should not be underestimated. In a world that seems very divided, it is more important than ever to bring people together. Because a connected community is the most important thing in the world to bring hope.”

To support our aims, please sign up to our social media platforms and share our work. Signing up to our Engagement Network will also help us strengthen connections among the Parkinson’s community. Look out also for calls for action, such as our work with AbbVie demanding better care in Europe.

“Nothing changes unless people push for it,” Amelia says. “Coming together as a collective voice, we will have more force to push with. And collectively we are stronger, so will have a greater chance of achieving real change.”

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Parkinson’s group PD Avengers seeks Spark the Night campaign support

11 February 2025 By Christy McGhee
News PD AvengersSpark the NightWorld Parkinson’s Day

Patient-led Parkinson’s advocacy organisation, PD Avengers, is calling for the Parkinson’s community to sign up to its 2025 World Parkinson’s Day campaign. As part of the organisation’s aim of ending Parkinson’s, the Spark the Night campaign is designed to raise awareness of the condition around the globe.

The worldwide campaign will see government buildings and landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day. To make 2025’s efforts brighter than ever, help is required from “country lead” volunteers.

Spark the Night country leads

Building on the success of previous years, this year’s Spark the Night campaign hopes to light up more than 650 buildings (twice last year’s achievement) in blue around the world. PD Avengers is calling for volunteers to lead the campaign in specific countries.

The voluntary roles include tracking building and landmark requests, and co-ordinating communications within your country. PD Avengers’ President Larry Gifford has invited all who are interested in emailing him at [email protected].

“The night often amplifies the isolation, anxiety, and loneliness felt by those living with Parkinson’s,” he says. “‘Spark the Night’ is our way of turning that darkness into light – lighting the world with hope and solidarity for the people affected by this disease.”

Parkinson's group PD Avengers seeks Spark the Night campaign support

Individual volunteers

A new initiative is also being launched this year, to complement the Spark the Night campaign. The Sparklets project invites individuals from the Parkinson’s community to light up a personal space – such as a home, office or doorway – with blue lights to mark the occasion. Those taking part can take a photo of their lights, and upload it to a special link.

It is hoped 1,000 spaces will be lit up for World Parkinson’s Day on 11 April, in support of the 11.8 million people affected worldwide. Join the Sparklets movement here.

The organisation is also marking World Parkinson’s Day by challenging the Parkinson’s community to complete two million sit-to-stands in 24 hours. www.standuptoParkinsons.com 

“We will also be accepting videos in advance of World Parkinson’s Day for our 24-hour live stream,” Larry adds. 

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“You don’t have to go through this alone”: Alberto Amil Lago and Diego Santos García on the Degén Foundation

Alberto Amil Lago, who has Parkinson’s, and is Honorary President of Spain’s Degén Foundation, and Diego Santos, its new President, talk to Parkinson’s Europe about the organisation they set up together, which is working hard to improve life for Spanish-speaking people with Parkinson’s through education, community and research
06 February 2025 Verity Willcocks
Stories charitySpain
Diego Santos García and Alberto Amil Lago

“When I was diagnosed with Parkinson’s disease, I found that there was a great lack of knowledge about it,” says 53-year-old Alberto Amil Lago, who lives in A Coruña in northwest Spain. He was also, understandably, concerned that there was no cure.

Alberto was 38 when he was diagnosed with Early Onset Parkinson’s in 2011. The neurologist who gave him this life-changing news was Diego Santos García, who currently works as Coordinator of the Movement Disorders Unit at the Department of Neurology in CHUAC (Complejo Hospitalario Universitario de A Coruña in Galicia) and Hospital San Rafael, A Coruña.

When Alberto spoke to Diego, who had become a friend, about his concerns, they decided to set up a foundation to help find a cure for Parkinson’s and to educate the Parkinson’s community about the condition. Established in 2015, it started out as the Curemos el Parkinson (Let’s Cure Parkinson’s) Foundation before becoming the Degén Foundation, broadening its scope to include all neurodegenerative conditions.

“This joint journey began with a single objective: to improve the quality of life of people who suffer from one of these diseases, as well as [find] the cure for neurodegenerative diseases,” says Alberto, who became the Foundation’s first President.

“Together against neurodegenerative diseases”

Today, in the field of Parkinson’s, the Foundation, a not-for-profit private organisation, aims to promote research to help find a cure, to inform people with Parkinson’s about the condition, and to create community among them, with the chief aim of improving their quality of life.

“The central motto of the Foundation is ‘Together against neurodegenerative diseases’,” says Diego, before explaining how important it is for those with Parkinson’s to be part of a patient community.

“‘Together’ also refers to the fact that within the field of research, another of the Foundation’s pillars, the collaboration of numerous agents of society, is necessary to one day achieve a cure and eradication of these diseases,” he says.

The Foundation’s community website conoceelparkinson.org, set up to educate and inform people with Parkinson’s about the condition, is now the most visited Spanish-language Parkinson’s portal in the world, with 15,000 Facebook followers.

Diego puts its success down to the “quality of the product”. “From the beginning, the project was managed with the patient in mind, understanding that there was a clear desire for information on the part of patients, which was largely unsatisfied. To do so, we have surrounded ourselves with fantastic collaborators, both in strategy and in the writing of the content.”

“You don’t have to go through this alone”

And this year the Foundation is going further by launching the Degén Community project, with a motto of “You don’t have to go through this alone”.

“The Degén Community is very ambitious and wide-ranging,” says Diego. “Our great challenge is to become the main community of Parkinson’s patients in the Spanish-speaking world and in particular to be able to positively influence their quality of life through emotional support and comprehensive care programmes, both of which are necessary for any Parkinson’s patient and both of which are absent in the health systems of Spain and Latin America. Specifically, we will try to demonstrate with facts that it is possible to organise and implement a comprehensive patient care system that is cost-efficient and with measurable positive results,” he says.

He continues, “With this we want to directly address the Parkinson’s disease patient who often suffers from feeling isolated and who finds it difficult to remain connected to his world because he feels misunderstood and ends up withdrawing. We want to help with that,” he says.

Research is key for the Degén Foundation

Research is also a key part of the Foundation’s work. Early on, it set up COPPADIS, an award-winning study conceived by Diego to investigate the progression of Parkinson’s. Alberto would become one of nearly 700 people with Parkinson’s in Spain and other countries who have taken part in this far-reaching project. One of the largest studies in Europe, it has generated over 100 papers and abstracts to improve our understanding of the condition.

And the research continues. Diego explains: “We are currently conducting several studies such as Inlevo-Life PD, which analyses the impact of inhaled levodopa in patients with Off episodes. We are also collaborating on the EPA TcD ESP project, which consists of creating a registry of patients undergoing therapy with devices for analysis over a period of five to 10 years, which will allow us to collect a lot of valuable information.

“We have also joined forces with the National Biobank Platform to launch a brain donation programme for people affected by Parkinson’s. The 12 brain banks that are part of the project, together with the work in COPPADIS, will represent an important advance in Parkinson’s research, allowing us to study the entire evolution of the disease, from diagnosis to death, and therefore take us closer to our goal of beating Parkinson’s.

“In addition, we are evaluating and looking for partners to be able to continue with the COPPADIS project in order to extend the follow-up period from seven to 10 years, which is a milestone in the sector,” says Diego.

Looking ahead

The Foundation has received many awards for its work, and Diego is rightly proud of what the organisation he and Alberto set up has done and continues to do. “I am very proud of what we have achieved, since we started out as a small Foundation, with few resources but with a lot of desire and enthusiasm. Over the years, we have had mistakes and successes, but we have become, I believe, a reference player in the field of neurodegenerative diseases, especially Parkinson’s disease, in Spain.”

Unfortunately, a deterioration in Alberto’s health due to Parkinson’s and a more recent diagnosis of ALS, meant that in April last year he had to pass the presidency of the Foundation to Diego, but Alberto is in no doubt that it is in good hands.

“Given that this project has been something that the two of us started together, I believe that there could not be a better president than Diego who could take on this baton,” he says.

He adds that, “Although I am Honorary President of the Degén Foundation, I continue to fight to achieve my goal, which is to find a cure for neurodegenerative diseases.”

Find out more about the Degén Foundation

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“We are stronger together”: tackling inequalities among European Parkinson’s communities

03 February 2025 By Christy McGhee
Insights empowermentstrategy

In the second in a series of articles spotlighting the three pillars in Parkinson’s Europe’s new strategy, we explore the issues surrounding the differences and inequalities experienced by the many Parkinson’s patient organisations and communities in Europe, and how we hope to empower them to bring about change.

Parkinson’s Europe’s work aims to empower all our communities to use the resources they have as effectively as possible, regardless of their starting point.

Our Strategic Director Amelia Hursey explains: “The more we support our member organisations, the more they can support their own communities. Our aim is to help them to help themselves. It is about enhancing the Parkinson’s community as a whole, which includes identifying the areas where some communities have less than others.”

The empowerment pillar of our new strategy has several key goals to help the community grow stronger across Europe. These include supporting our member organisations by creating and sharing knowledge-building resources, and connecting communities with each other across Europe. And the first steps we take in 2025 are just the beginning of a four-year journey.

What does inequality among different Parkinson’s patient organisations in Europe look like?

Parkinson’s Europe has a diverse range of national member organisations. This gives us a glimpse of the differences they experience with regards to accessing funding, resources and knowledge.

“Our organisations have memberships numbering between just over 100, right up to nearly 10,000,” says Amelia. “You might have an organisation with a very small team, or a very large one. As well as team size, the level of knowledge and experience the organisation has can depend on how new or old the organisation is.

“Look at some of our most recent members – the Association of Patients and Caregivers PAR.KIN.S.O.N. was set up in 2019, while the Catalan Parkinson’s Association (ACAP) was founded in 1985. It is the diversity of our member organisations that highlights to us the inequality regarding access to resources and experience.”

Better understanding to support and empower

The first steps in this four-year strategy will include gaining a better understanding of the landscape, with those most affected by Parkinson’s at its heart.

“We will start by creating a steering group to guide the work we are doing, and to make sure it is relevant to our members,” says Amelia. “This will be made up of representatives from all our stakeholders groups – people with Parkinson’s and their families and supporters, voices from the industry, healthcare professionals, and of course our member organisations. We want to make sure the whole Parkinson’s community is connected together, and that we are heading in the right direction in our ambition to make them feel empowered.”

Building connections and sharing assets

We know the spread of knowledge, understanding and engagement across the Parkinson’s community in Europe is not balanced. And we want to help.

“We recognise there are inequalities, but we know our members can empower and enrich each other. So our role is partly to bring them together to bring about that change,” Amelia says. “If we can support our members by connecting them to more expertise, this will decrease their feelings and experiences of inequality. Where some member organisations have access to more than others, how can we connect them to empower and support each other? What tools can we help provide them with to help connect with their communities? All of our empowerment work will focus on improving these connections.”

Taking inspiration from social enterprise models, Parkinson’s Europe’s approach will encourage the exchange and offering of assets to empower and strengthen the community as a whole. “It is about sharing ideas, expertise, knowledge, opportunities, connections, resources, and time,” says Amelia.

Uplifting partnerships

One of our ambitions is to connect national patient communities not just with each other, but with other members of the European Parkinson’s community, like healthcare professionals and research organisations.

Parkinson’s Europe’s successful Engagement Network is one tool we will use to achieve this. “Our ambition is to use the network to increase connections among volunteers,” says Amelia. “We plan to grow our volunteer base in 2025. This will give as many people as possible across Europe the chance to connect with opportunities and grow their knowledge.”

Parkinson’s Europe’s research partnership with independent non-profit foundation EUPATI is another example. The partnership supports EUPATI’s efforts to connect patients and their representatives with research and the development of medicines, empowering them to make meaningful contributions, and improving the availability of medical information.

“We will be enhancing the partnerships we already have to raise up the voice of the European Parkinson’s community from a global perspective,” Amelia adds.

Toolkits and services to enhance the support we offer

In the same way, Parkinson’s Europe will also be looking to evolve the services and opportunities already offered to its members. “We want to heighten and improve what we are already doing as an organisation, for example developing our member meetings,” says Amelia.

We also want to enhance what we bring to the table by being able to translate even more of our content into different languages. In this way, we can empower our member organisations to more easily share information with their own members.

Parkinson’s Europe Director of Communications Laura Vickers-Green explains: “As a Europe-wide organisation, language barriers have always been a major and understandable concern for our audience.

“With increasingly sophisticated translation software, as well as a growing pool of generous volunteers, we were able to produce resources in 12 languages last year. And as our long-term translation strategy takes shape, we’re going to be reaching more of the European Parkinson’s community than ever before.

Work will also be done on building and sharing toolkits on topics which our members have identified as areas where they need more information, such as fundraising campaigns. “We have also  started creating the research toolkit to help members  feel more confident about talking about research,” says Amelia. “ And as well as creating new toolkits, we will also highlight resources our members already have, bringing them into a central pot to be accessed by others.”

Using data to strengthen our fight for change

Using data will also be key to growing our understanding, and empowering our own – and our members’ – calls for progress. Our three strategic pillars are designed to work together, and we plan to use the insights gathered as part of our data & innovation pillar to drive empowerment.

Amelia points to a recent report, “Using a Sex- and Gender-Informed Lens to Enhance Care in Parkinson’s Disease”, as an example of how this could work. Co-authored by Parkinson’s Europe President, Josefa Domingos, the study identifies important differences in the symptoms and experience of men and women with Parkinson’s, and ways in which care can be improved.

“From this data, we can see a group being underserved,” Amelia says. “We can use this information to plan a campaign to help empower that part of the community, and improve care for them.”

Driven by a belief that we are stronger together, our empowerment pillar intends to show the power of connection, sharing knowledge and support that will benefit the whole European Parkinson’s community.

Find out more about Parkinson’s Europe’s new strategy.

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How do you define the impact of Parkinson’s in Europe?

29 January 2025 By Christy McGhee
Insights datastrategy

In the first of a series of articles introducing the three pillars of our new strategy, we speak to Parkinson’s Europe’s Strategic Director Amelia Hursey to find out more about our new approach to data and innovation.

She tells us how we’ll be approaching such a large – and important – project, and why this pillar is so key to driving positive change for people with Parkinson’s.

Parkinson’s Europe is committed to helping the Parkinson’s community access the highest standards of treatment, support and care. How will the Data & Innovation pillar support this vision?

“Put simply, the data out there will help us build stronger arguments that we can use to create advocacy campaigns. These will empower decision-makers to improve healthcare systems for people with Parkinson’s.

“We also know there are many technology organisations out there creating amazing new devices to help support people with Parkinson’s. We’d like to learn more about it, and share how that might also improve people’s lives.”

What will the work to define the impact of Parkinson’s in Europe involve?

“We firstly need to gather together the stakeholders who have this knowledge. We need to survey and understand what data is out there, and identify the gaps. This work will be guided by our stakeholders, especially people with Parkinson’s but also their partners and supporters, healthcare professionals and our industry partners.

“Parkinson’s UK has been doing a great job of trying to understand the impact of Parkinson’s in the UK, and there have been other initiatives across Europe. But we don’t have a full data picture. We need to be able to look at all sets of data and see how they combine to create that impact picture. Because unless we bring it together in a useful way, we can’t do anything with it.”

What types of data will Parkinson’s Europe focus on?

“Our data collection will be about understanding not just who is affected by Parkinson’s, but also the socioeconomic impact Parkinson’s has on countries and communities. Setting it in context. It’s not just the people affected directly, but the wider impact on their partners, families, employers and so on.

“So we will start by bringing together stakeholders and scoping what we need to do next. When we have the data, we can identify the gaps. Once the gaps are identified, for example, what do we do about those gaps? The community will need to decide.

“That is why it is part of a four-year strategy, which will be refined and improved over time. We are just at the start. So much is changing in the information world every day, we can’t set out our expectations too far in advance.

“But we will be strategically flexible and responsive to what is needed, driven by our aspiration to understand the picture better.”

Will you focus exclusively on data related to Parkinson’s?

We need to think broadly, and we can learn from data about other conditions. But we also need to identify and use only the information that is relevant and useful. We serve our community first, but that does not mean we will not consider shared campaigns in the future.”

Why is gathering and updating data so important?

“It is important because data is only relevant for a specific point in time. The most recent prevalence study we are aware of took place in 2017. But more people are diagnosed with Parkinson’s every day.

“You always need to update figures to reflect what is really going on in society. We can then understand what has changed between one time period and another, and make the case for addressing any increasing changes or concerns.

“For example, if we gather information now that shows us that the number of people with Parkinson’s in Europe has risen by more than the expected average, in terms of people aging in Europe, that says there is something more going on than a standard aging population – and that needs to be addressed.”

How can Parkinson’s Europe use data to push for change?

“If more people are being diagnosed, then there is even more reason for it to be addressed by policymakers. Because there is an exponentially growing demand on healthcare systems, and economic cost, which in the current financial climate needs to be reduced.

“If you have people with Parkinson’s being diagnosed younger, it will reduce their working years, and potentially the working years of their closest family member. How can we help support people to be able to stay independent and therefore work longer? We will lose active service people from the economy, both the people with Parkinson’s and those who care for them. So we need to understand that data so it can help guide budget-holders and decision-makers.

“We recently held a roundtable event in partnership with Abbvie. These discussions identified that the role of the Parkinson’s nurse is really key to the care of people with Parkinson’s. And that more of them are needed in clinical teams to help with Parkinson’s care pathways across Europe as a whole. The quantitative and qualitative data from this work was then shaped into this call to action, which was created in collaboration with EFNA, Abbvie and MDS-ES. We are hoping it helps move the dial in European parliament. When the resulting petition is launched, we need as many people to sign it as possible.

“Parkinson’s Europe’s manifesto is another example where we have gathered and summarised data, and turned that into a solid foundation with which to guide our work.

How will this pillar support innovation to ensure that the Parkinson’s community benefits from advances in data, research and technology?

“Data and innovation are two sides of the same coin. With data we can innovate, with innovation we can gather more – and make more sense of – data. For example, many apps and gadgets are now creating data. How can we make that data serve people affected by Parkinson’s best?

“What artificial intelligence (AI) can do with health data sets is very exciting. AI tools can be used to make sense of different data sets to create a fuller picture, in a way we have not necessarily done before. There is currently a lot of work being done in this area. We need to tap into this and learn from those doing it really well and leading in this new innovative world.”

How can the Parkinson’s community support this work?

“We are just at the beginning of this huge, complicated journey, and we are really excited to explore and learn.

“So we encourage the community to join us, and support our campaigns. There will be many more opportunities to be involved in the future – so make sure you are signed up to our newsletter and our engagement network to stay in the loop.”

Find out more about Parkinson’s Europe’s new strategy.

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5 key takeaways from our new Strategy

22 January 2025 By Christy McGhee
Stories strategy

Parkinson’s Europe is thrilled to start 2025 with a brand new, multi-year strategy, and we think you should be too. Driven by our passion to support the needs of people with Parkinson’s and their families across Europe, we believe Parkinson’s Europe’s strategy is ambitious and achievable.

You can read more about Parkinson’s Europe’s strategy here, but below we are excited to share our top five takeaways as we embark on this four-year journey.

ONE: Parkinson’s at heart of new strategy

If you take one thing from our strategy, it is that it has the voice of people affected by Parkinson’s at its heart. It was created by the Parkinson’s Europe team using data and insights shared by people affected by Parkinson’s, healthcare professionals, and our member organisations.

To create the foundations of the strategy we used our manifesto, created in 2022 using the views of almost 1,000 people from the Parkinson’s community across 39 countries. We also looked at a variety of surveys and information sources we have collected through our partnership work, as well as the results from our most recent members survey. We also took inspiration from strategies used by other healthcare-focused organisations, and received support and guidance from our Board.

“The members survey and manifesto were the main data sources for framing for Parkinson’s Europe’s strategy,” says Parkinson’s Europe Strategic Director Amelia Hursey, who led its creation. “We looked through all the information and pulled out the key themes that were repeatedly mentioned across the data resources, which created our three action pillars. We soon saw that having strategic pillars, rather than goals, made more sense to help us to fulfil the needs of our community.”

The plans were then sense-checked by member organisations, she adds, saying: “It did evolve – for example ‘data and insights’ became ‘data and innovation’. We made sure that the pillars are supported by our core values as an organisation. They are designed to expand and focus the work we already do.”

TWO: Tracking data and innovation in a fast-changing world

Our data & innovation pillar is intrinsic to our strategy. “We are excited to track and strategically understand what is happening in Europe, especially when thinking about how the world is evolving so quickly with new technologies and artificial intelligence,” Amelia says.

“Without data we can’t do anything, as we do not have enough evidence or sway to change the dialogue about what is happening to people with Parkinson’s in Europe. There is no clear data picture of Parkinson’s in Europe right now, and no central data source.”

With lofty ambitions baked into the strategy, the first steps will be identifying those best placed to support and further our goals. “We will start with collaboration and by identifying who holds relevant data in Europe to do with Parkinson’s. It is not necessarily about being the leader here, but being a collaborator or partner within the work that is happening. It is about activities that will take place over the next four years – to make sure we get the picture as in focus as we can before we make each step forward.”

THREE: A strategy to engage and empower

One key focus for our empowerment pillar will be to grow our Engagement Network, taking the project to the next level (you can sign up here). “We are excited to see how it can evolve to best serve the Parkinson’s community in Europe, putting even more opportunities out there for all,” says Amelia.

Parkinson's Europe's new strategy

Plans include even more content, connecting more of the work to our map, and sharing even more opportunities. She adds: “We will increase our outreach and connection with the people who are producing and leading on call-to-action opportunities. It is also about bringing more people towards the network, so they can benefit from knowing what activities they can be involved with.”

FOUR: Raising awareness so more people understand Parkinson’s

Our Awareness and Visibility pillar intends to shine a spotlight on Parkinson’s – and the fact it is the world’s fastest-growing neurological condition – to reach those who can make a tangible difference.

“We have an obligation to make as many people as possible aware of Parkinson’s, so they can expand their knowledge on what it is like for people living with the condition day to day,” Amelia explains. “We want to help them become advocates for the condition so they increase the visibility for others as well. By making it more visible to decision-makers in Europe, we will have more ability to change the narrative about Parkinson’s.”

FIVE: Parkinson’s Europe strategy reflects we’re stronger when working together

Much like the various groups within the Parkinson’s community, the three pillars in Parkinson’s Europe’s strategy are greater than the sum of their parts. “We are excited that all these three pillars interlink and coexist together,” says Amelia.

It is this synergy that strengthens the plan. “Without data and innovation, we cannot empower our community; if we do not empower them, we will not increase visibility. Without visibility, we will not have access to the new innovations out there. So all three pillars work together,” Amelia says. “And all of them reflect the issues that need to be addressed, as highlighted to us by the Parkinson’s community across Europe.”

Please see here for more information on Parkinson’s Europe’s new strategy for 2025-2028.

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