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Funding Irish Research for Degenerative Diseases of the Brain

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Western Gateway Building

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Cork

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Neurodegenerative diseases are chronic, debilitating and largely untreatable conditions that are strongly linked with ageing. There are an estimated 55,000 people living with dementia and an estimated 9,000 people living with Parkinson’s disease in Ireland. The biggest risk factor for both dementia and Parkinson’s is age, and current increases in life-expectancy mean that these diseases are becoming more and more common. Ireland has one of the fastest growing ageing populations where approximately 1.5 million people will be > 60 years as soon as 2020 (National Research Prioritisation (NRP) report 2012). It is predicted that the numbers of people living with dementia will double in the next 20 years in the absence of preventative interventions, representing a growing health crisis.

Neurodegenerative diseases place huge costs on society – both emotional and economic, and these costs represent one of the fastest growing burdens on healthcare systems in developed countries. For Alzheimer’s Disease alone, the total direct and informal care costs are presently estimated at €2 billion per annum in Ireland. The total health & social care costs for dementia exceed stroke, cancer and heart disease combined, making it Ireland’s most expensive disease. Despite this, funding for research in dementia and neurodegeneration has been disproportionately low when compared with the burden of disease. Only 2% of the national research budget has been allocated to neurodegenerative disease research, despite the significant societal burden of these diseases.

In 2012, the WHO published Dementia: A Public Health Priority to provide the knowledge base for a global and national response and to facilitate governments and other stakeholders to address the impact of dementia as an increasing threat to global health. Other countries have invested heavily in neurodegeneration research in recent years and have prioritised it at the highest level of Government. In the UK, David Cameron announced the Prime Minister Challenge, bringing political attention to dementia, putting it on the global agenda and ensuring millions of pounds were invested in dementia research. In France, the National Plan for Alzheimer’s Disease included €200 million over 5 years for research. The philanthropist Bill Gates recently announced a $50m (€42m) investement is research to develop new treatments for Alzheimer’s disease. Currently, Ireland invests approximately €1 per person for neurodegeneration research. If that was to be increased to €5 per person Ireland would begin to equate to international norms.

In order to address this large funding gap, a meeting is being organised by DNNI (Dementia and Neurodegeneration Network Ireland) and Cork Neuroscience Centre in June, bringing together key stakeholders to discuss this issue. Funding for the meeting has been generously provided by IBRO (International Brain Research Organisation). We want to discuss how we can increase funding in this important research area and the day will explore the following themes:

Session 1: The growing health priority of neurodegenerative diseases in Ireland

  • How can we improve the funding landscape for neurodegenerative disease research in Ireland?

Session 2: Patient-Public-Researcher Advocacy (PPRA)

  • How do we encourage advocates for research?

  • How do we foster a society that values sustainable long-term research initiatives for dementia & neurodegeneration in Ireland?

Session 3: Charity and Philanthropic Funding Support

  • Does Ireland need a neurodegeneration research charity that would fund research?

Session 4: Academic-Industry Engagement

  • How can we encourage more engagement/partnerships between academia and industry?

Confirmed Speakers (more to follow):

- Prof. Cora O'Neill, Director Cork Neuroscience Centre

- Prof. Ralph Martins, Director of the Centre of Excellence for Alzheimer's Disease Research, Edith Cowan University, Western Australia

- Dr. Haung Yu, Taub Instiute for Research on Alzheimer's Disease, Columbia University, New York

- Fionnuala Sweeney, Award-Winning Broadcast Journalist and Global Brain Health Institute (GBHI) Alumnus

- Dr. Barry Boland, Lecturer Dept of Pharmacology & Therapeutics, UCC

We would be delighted if you could join us on the day and there will be opportunties for you to share your knowledge, experience and expertise. All are welcome – researchers, clinicians, funders, policy-makers, people living with dementia (including Alzheimer’s Disease)/ Parkinson’s Disease/ other neurodegenerative conditions & family carers, patient organisations & advocacy groups, industry representatives, journalists, politicians, students and interested members of the public. We aim to develop a plan of action for tackling the research funding gap in dementia & neurodegeneration. Enhancing funding will benefit all researchers working in this area and ultimately provide better detection, treatment and management of these brain diseases. We are facing a global health challenge in relation to neurodegenerative diseases and research is a key element in tackling this challenge - the time to act is now!

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Western Gateway Building

Western Road

#Western Gateway

Cork

Ireland

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