Parkinson’s disease is the fastest-growing neurological condition in the world, affecting an estimated 10 million people globally, including around 18,000 in Ireland—a number expected to rise as the population ages. The condition profoundly affects quality of life and carries wider societal and economic costs associated with long-term care and support. 

Despite decades of research, there are currently no therapies that can slow or halt Parkinson’s disease, with existing treatments providing only symptomatic relief. This underscores the urgent need for next-generation approaches, such as spatial omics, which can map early, cell-specific disease mechanisms, and help identify novel targets for disease-modifying therapies. 

To mark World Parkinson’s Day on 11 April, FutureNeuro’s Parkinson’s Patient and Public Involvement (PPI) panel has launched a new awareness campaign shaped by lived experience and informed by their active participation in research. The campaign seeks to engage the public, researchers, and policymakers, highlighting the realities of living with Parkinson’s and the importance of continued scientific progress. 

About the campaign 

Delivered through posters and digital infographics, the campaign was co-designed by members of the Parkinson’s PPI panel. Their involvement extended beyond design, shaping the key messages themselves to ensure the content reflects the priorities and perspectives of people directly affected by the condition. 

Across the series, a unifying theme emerges: the experience of invisibility. Despite Parkinson’s growing prevalence, public awareness remains limited, and research and treatments for other conditions often advance more rapidly. 

The materials are tailored to different audiences and highlight a range of experiences. Themes include the diversity of Parkinson’s presentations — not everyone experiences tremors, and early signs can include loss of smell or subtle changes in facial expression — as well as the reality that the condition is not confined to older adults. While most diagnoses occur after age 60, early-onset Parkinson’s can appear before 50, and in rare cases, the condition affects children and teenagers. 

One poster, aimed at policymakers, draws attention to systemic challenges such as delays in diagnosis and uneven access to multidisciplinary support. 

Research shaped by lived experience 

The campaign draws on the expertise of FutureNeuro’s Parkinson’s PPI panel — the same group that contributes to the €1.8 million 4DPD-Omics project, coordinated by Professor Jochen Prehn and Dr Niamh Connolly at RCSI University of Medicine and Health Sciences. 

The 4DPD-Omics project takes a novel approach by mapping where and when changes occur in individual cells across the brain in Parkinson’s disease. By combining multiple “omics” layers, including genes and proteins, with spatial and temporal information, the project builds a detailed picture of disease processes that hasn’t been possible before. This level of resolution makes it an ambitious effort with the potential to identify early disease signals and new targets for future therapies. 

A particular focus is α-synuclein, a protein that accumulates in affected brain cells and is a defining feature of the condition. By examining how genes and proteins behave across different cell types and stages of Parkinson’s, the project aims to support the development of therapies that go beyond symptom management. 

Patient and public involvement is central to both the research and the campaign. FutureNeuro’s Parkinson’s PPI panel — alongside a partner panel in the Netherlands — helps shape research priorities and guides how findings are communicated, including through this awareness initiative. 

A shared focus on progress 

This World Parkinson’s Day campaign reflects FutureNeuro’s commitment to engaged research that is both scientifically ambitious and shaped by the experiences and insights of those living with the conditions we study. It also forms part of a broader international effort: the World Parkinson Congress, taking place from 24–27 May 2026, will bring together researchers, clinicians and people with lived experience to share knowledge and advance the field. 

Further information and support 

To learn more about the campaign, support Parkinson’s PPI activity, or explore patient involvement opportunities at FutureNeuro, contact Karina Halley at karinahalley@rcsi.ie, or Lyndsey Butterworth at lyndseybutterworth@rcsi.ie.  

You can also explore the following organisations for further information and support: 

4DPD-Omics | EOPD – Early Onset Parkinson’s Disease in Ireland | Parkinson’s Ireland |Parkinson’s Europe | Parkinson’s UK | Move4Parkinsons | The Michael J. Fox Foundation | Rock Steady Boxing | World Parkinson’s Congress | Neurological Alliance of Ireland