Archives

07

May,
2015

Rosário Zincke dos Reis is a lawyer since 1987, specially dedicated to Legal Rights of People with Incapacity, guardianship and many other legal issues related to people with dementia.

Rosario is a member of Alzheimer Europe Board since 2008, being, since 2010 the Honorary Treasurer. She has also served as Chairperson of Alzheimer Portugal (2001 – 2012) and is a current member of their Audit Committee.

Since 2009, on behalf of Alzheimer Portugal and in the framework of the dementia European movement, led by Alzheimer Europe, she has been actively involved in lobbying the national political decision makers to create and implement in Portugal a National Dementia Plan or Strategy.

On behalf of Plataforma Saúde em Diálogo she is a member of the Advisory Board for the National Health Plan 2012-2016 in Portugal, having the opportunity to stress the patients and carers perspectives and main needs.

07

May,
2015

Päivi Topo, PhD is a medical sociologist and social gerontologist. Her research interests concern physical and psychosocial health and social care environments, wellbeing of people with dementia, technology and ethics.

Päivi has been an advisory member of national dementia plan group in Finland and a board member of Society for Memory Disorders Expertise in Finland. She has worked as secretary general in The National Advisory Board on Social Welfare and Health Care Ethics ETENE (Ministry of Social Affairs and Health) in which she is recently a board member representing patient and client perspective and social care expertise. She has over one hundred publications, including also publications aiming at popularizing research findings. She is the director of The Age institute which is a non-profit, multidisciplinary research and development center promoting ageing well.

 

 

07

May,
2015

Martin Rossor is Professor of Clinical Neurology at the National Hospital for Neurology and Neurosurgery London and the NIHR National Director for Dementia Research.

Martin established a specialist cognitive disorders clinic which acts as a tertiary referral service for young onset and rare dementias. In order to support the clinic he established a telephone support service for patients “Counselling and Diagnosis in Dementia” (CANDID) which received the BUPA/Patient Association Award in 2000 and has since fostered the development of a number of patient support groups. As editor of JNNP (2004-2009) he introduced ‘patient choice’ in which an article of particular relevance was selected by a patient organisation representative for free online access.

As Director of DeNDRoN (Dementias and Neurodegenerative Diseases Clinical Research Network) he supported the NIHR vision of strong public and patient engagement and involvement through patient and carer representation on clinical study groups and involvement of patients and carers in portfolio development and grant writing. As NIHR National Director for Dementia Research he has launched, in collaboration with Alzheimer’s Society and Alzheimer’s Research UK a public portal – Join Dementia Research – for those interested in participating in research to register and be matched to relevant studies. He has worked closely with a number of charities and is a vice president of the UK Alzheimer’s Society.

07

May,
2015

Jennie Popay is Professor of Sociology and Public Health at the Institute for Health Research, University of Lancaster, UK.

Jennie’s research interests include social and gender inequalities in health, the sociology of knowledge, public/community engagement in health decision making and the evaluation of complex social interventions. She has used a range of methods in her work but has a particular interest in developing the role of qualitative research in public health including developing methods for the review and synthesis of qualitative research and mixed method studies. She was founding convenor of the Campbell Collaboration Process Implementation Methods Group and the Cochrane Collaboration Qualitative Methods Group.

Jennie is the Co-ordinator of the Global Social Exclusion Knowledge Network (SEKN) established by the WHO Commission on Social Determinants of Health (CSDH). She is also involved in the NICE National Public Health Collaborating Centreon Community Engagement – a collaborative initaitive with the Department of Health at the University of Liverpool. The centre has undertaken an extensive review of the evidence on the impact of community engagement in initiatives aiming to address the social determinants of health to inform the work of the NICE community engagement programme group.

07

May,
2015

Florence Pasquier, M.D., Ph.D. (in cognitive neuropsychology) is Professor of Neurology in Lille university Hospital with over 30 years’ experience of running a memory clinic in Lille, France, offering knowledge, best care and technology to all, not just university hospitals.

Florence leads a research team entitled “vascular and degenerative cognitive impairment”. Involved in clinical research on cognitive and behavioral disturbances. Important collaborations on imaging, epidemiology, and basic research.

Florence is in the process of developing a clinical research team, which has PPI as a priority – providing culturally-sensitive information to explain the importance of PPI in research (brain, blood donation, cohort participation, biobanking).

07

May,
2015

Dr. Derick Mitchell is the Chief Executive of IPPOSI – the Irish Platform for Patient Organisations, Science & Industry.  IPPOSI is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of policy and medicines.

Prior to joining IPPOSI, Derick was Communications Manager with the EU Joint Programme – Neurodegenerative Disease Research (JPND), where he was responsible for developing external communications strategies and supporting stakeholder engagement activities with patient organisations, researchers and industry across Europe.

Derick has over eight years’ experience of management, advocacy, scientific communications and patient/public engagement, through previous positions at both the European and the national level (JPND, BBMRI Stakeholders’ Forum, REMEDI NUI Galway) and has a strong interest in the area of patient and public involvement in research.

Derick graduated with a BSc. (Hons) in Biotechnology from NUI Galway (2000) followed by a PhD in Molecular Medicine from University College Dublin (2004).  Outside of IPPOSI, Derick spends his free time attempting to influence his two toddler daughters.

07

May,
2015

Prof. Mogens Hørder has been director and chief consultant at the Department of Clinical Bio-chemistry, Clinical Pharmacology, and Clinical Genetics, Odense University Hospital and has been Dean at the Faculty of Health Sciences, University of Southern Denmark.

Mogens has also been a member of a number of expert groups, committees and commissions on national and international levels within the areas of clinical biochemistry, quality development and research and education policy. Mogens has been a member of the board of the Danish Council for Strategic Research and now works as an expert for Innovation Fund Denmark. He is also a member of the Management Board at JPND and is leading a number of working groups in the network.

07

May,
2015

Simon Denegri is National Director for Patients and the Public at the National Institute for Health Research (NIHR), and Chair of INVOLVE – the national advisory group for the promotion and support of public involvement in research funded by NIHR.

Simon was Chief Executive of the Association of Medical Research Charities (AMRC) from 2006 until 2011 and, prior to this, Director of Corporate Communications at the Royal College of Physicians from 2003. He also worked in corporate communications for Procter & Gamble in the United States from 1997 to 2000. He has a long-standing personal and professional interest in the needs and priorities of people with dementia and their carers and currently chairs the Lay Champions Group for the national portal on dementia research that is to be launched this year. He is a member of the NIHR Advisory and Strategy Boards, and a Board member of the UK Clinical Research Collaboration (UKCRC), Farr Institute and care.data programme respectively.

He blogs about the public and health research at http://simon.denegri.com and publishes his poetry at http://otherwiseknownasdotcom.wordpress.com

07

May,
2015

Lily Cappeletti is the Associate Director, Research Partnerships for the Michael J. Fox Foundation. In her current role, Lily is responsible for engaging members of the Parkinson’s Disease community in clinical research and leads the strategic development and expansion of Fox Trial Finder.

Prior to joining MJFF, Lily managed strategic partnerships and public affairs at MTV Networks where oversaw the development and implementation of social action campaigns for the network. In this capacity she aligned coalitions of public and private partners to generate public awareness, consumer engagement and social impact. Lily also worked as a Senior Account Executive at Edelman where she helped fortune 500 companies to develop and implement corporate social responsibility strategies.

21

Apr,
2015

Marco Blom, MSc is the Scientific Director Alzheimer Nederland and is also a Board Member of the Delta Plan Dementia (National Program in Netherlands).

Marco has experience in the Netherlands with the involvement of people with dementia and carers in research studies. Board member on Dutch Deltaplan for dementia; Founding member of Alzheimer Europe; member of ADI Task force on Scientific Research – links to the G8 summit. Alzheimer Nederland has their own SRA which, like JPND, involved a public consultation on priorities.