Joke Jaarsma

Vice President

Joke Jaarsma is President of the European Alliance for Restless Legs Syndrome as well as Vice-President of the Dutch Restless Legs Patient Group. She has suffered from severe Restless Legs for many years. In her working life Joke was Publisher of scientific books and journals.

Audrey L. Craven

Vice-President

Audrey Craven is founder and President of the Migraine Association of Ireland (MAI). She has suffered from severe migraine all of her life, it did not ruin her life but it certainly RULED it. Over the years she has learned to manage the condition.

MAI celebrated its 10th Anniversary in 2004 "A decade that made a difference." She is a founding member and current President of the European Headache Alliance (EHA) and Vice-President of the European Federation of Neurological Associations (EFNA) and sits at the Independent Patient-Chair of the European Headache and Migraine Trust International Congress (EHMTIC). Audrey is a former Council Member of the World Headache Alliance (WHA); former Chairperson of the Neurological Alliance of Ireland (NAI) and member of the neurological Expert Advisory Board that produced three Standards of Care Documents.

Audrey received a "Fabulous Founders" award for volunteering during 2001, the UN International Year of the Volunteer and she continues to work on a voluntary basis. Recipient of the international Elizabeth Garrett Anderson Award in 2004, Audrey donated the £10,000 prize to MAI for the development of services in the West of Ireland and in 2008 officially opened the European Headache and Migraine Trust International Congress – the first 'patient' to have such an honour.

Bea De Schepper

Treasurer

Bea is the co-founder and a volunteer of the Huntington Liga vzw Belgium. At present she is their Vice-President and also the President of the European Huntington’s Association and member of the advisory board of the STEM-HD European Network 2007-2010. She also sits on two working parties of the European Huntington's Disease Network – ‘Quality of Life’ and ‘Genetic Testing’ and well as serving on the Genoom working party at the Katholieke University of Leuven.

Bea’s mission is to work for more understanding and the comfort of Huntington’s patients and their families.

Balthasar Schaap

Secretary General

Balthasar Schaap is a retired medical doctor, consultant in Public Health and forensic medicine and is represents Euro-ataxia. He served for 15 years with the Ataxia patients’ organisation in the Netherlands as one of their medical advisers. Balthasar’s main interest is degenerative and hereditary neurological diseases: he is a member of a Cerebro-Spinal Ataxia family and has the gene for this disease.

Balthasar attends the meetings of the National Ataxia Foundation in the US, Eurordis and the European Federation of Neurological Societies (EFNS) and report back to the patients in the Netherlands about the latest developments.

Manuela Messmer-Wullen

Member at large

In her active professional life she worked in different companies and agencies in Europe as Marketing- and Advertising Manager, for other organisations she was responsible as a PR Director. Her last active profession was Head of International Communication Department in Philips Speech Processing, 1992 – 2001. In this function she was responsible for the worldwide introduction of the technology of Speech Recognition and Voice Commands.

In 1997 she became a Stroke Surviver during a business trip. The rehabilitation process and therapies took in total more than 7 years to become a stabile situation as today. In 2001 she decided to leave her paid professional life, she wasn’t able to stand in the operative daily work and to do the necessary business travels. In 2004 she was asked to take over the presidency of SHÖ – Schlaganfallhilfe Österreich, (Austrian Stroke Selfhelp Association), which she founded together with a group of interested patients and professionals, a non paid position. The same year a national Austrian Selfhelp Association for all the heads of health related groups in the country was founded and she worked out together with others the statutes of this new organisation. At the same time the first meetings took place to constitute the SAFE – Stroke Alliance for Europe, the first European Stroke Patient Organisation with headquarters in Brussels. Here she was able to work out the statutes, the constitution and the mission statement on a European level. In this new organisation she became board member and stayed from 2004 till November 2010. Afterwards she was asked to stay for SAFE as a Liaison Officer to use all her valuable contacts. In October 2009 she became a board member of EFNA and represents the SAFE.

Irem Hattat

Member at large

Irem graduated from Istanbul Technical University Management Engineering Department in 1993. Since 1997 she has been working at Hattat Uro-Andrology Hospital as Managing Director, following her studies on Strategic Health Care Management of Hacettepe University, Ankara. Under her father’s presidency, Irem Hattat contributed the organization of international sexual medicine congresses in 1993, 1995, 1997 and 2001 in Istanbul and 2000 in Barcelona. Following  his footsteps as the co-founder of European Sexual Health Alliance-ESHA, Irem Hattat founded the non-profit organization ’The Family Health Association’ to represent ESHA in Turkey. During the 2005 Congress of European Society of Sexual Medicine in Kopenhagen, her research won the first Prize for Best Clinical Research on Female Sexual Health.

Irem is currently the president of European Sexual Health Alliance (ESHA), an umbrella organisation for patient support groups across Europe to assist patients suffering from sexual dysfunction. ESHA’s purpose is to help every couple affected by sexual dysfunction to communicate openly about their sexual concerns in order to find a solution that improves the patient’s sexual function and the couple’s quality of life. She has been an active Board Member of EFNA since June 2010.

Monika Benson

Member at large

Monika Benson is president of Dystonia Europe. In 2010 she was re-elected for a second and last term. During her presidency Dystonia Europe has been the organiser of the 2 largest conferences ever held on dystonia: in Hamburg 2008 and in Barcelona 2011, which were both very successful. She is very pleased to continue to be involved in working for dystonia for the next few years and to be part of the organisations’s on-going modernisation process and development.

Monika was diagnosed with cervical dystonia about ten years ago and very soon joined the Swedish Dystonia Society to take part in the work of establishing a self-help group in southern Sweden. In 2006 she was elected a board member of SDF, Svensk Dystoniförening, and she is still very much involved in the work of the Swedish Dystonia Society, mainly responsible for international relations and managing different projects.

In November 2011 she was elected to the board of EFNA. Monika recognises how important it is for international patient organisations with different diagnosis to come together and work in partnership in order to have a stronger voice in the European context.

Jean Mossman

Policy Advisor

Coming soon

David Sinclair

Financial Advisor

David Sinclair has been EFNA’s advisor on matters of financial administration and governance since his appointment in 2009.  David also works as a volunteer for the Camden Branch of the Multiple Sclerosis Society of Great Britain and Northern Ireland where he was a trustee and Honorary National Treasurer for three years to 2008. In the past David has also volunteered for Age Concern Kensington and Chelsea (as Honorary Treasurer) and The Prince’s Trust (as a mentor).

David holds an honours degree in Civil Engineering from the University of Leeds, granted in 1967 and trained as a Chartered Accountant prior to building a career in banking and finance from 1968 to 1999. From 1989 to 1996 he held positions as part time lecturer in accounting at Westminster University and for The Securities Institute, and as an external examiner for the University of North London. In 2001 he completed a short course in Effective Financial Management of Charities from South Bank University London.

Stephen Pickard

Legal Advisor

Stephen Pickard was president of the European Parkinson's Disease Association (EPDA) from 2006 to 2009 and is currently Legal Advisor to the Board of EFNA (since 2006) and EPDA.  His father had Parkinson's and he has worked in the voluntary sector on neurological diseases for many years.

Stephen is an English solicitor (admitted 1979) and member of the New York (1985) and Brussels Bar (2007).  He is based in Brussels where he specialises in lobbying the European Institutions for a number of clients and interest groups and practises EU competition, trade and anti-dumping law.

Stephen has a BA in Law, Politics and Economics (Oxford Brookes 1976), a Graduate Diploma in European Studies (Bologna 1981) and an LLM in International Business Transactions(Columbia University, NY 1983).  He  works in English, French and Spanish and can get by in Italian and Portuguese.

As regards hobbies, he is married with three children - say no more!"

Lizzie Graham

Member at Large

Lizzie Graham has worked with the European Parkinson's Disease Association (EPDA) since it was formed in June 1992 and as Secretary General since 2001. During this time, she has developed close working relationships with non Governmental organisations, the treatment industry, healthcare professionals, people with Parkinson's and their families at both a European and international level. She is also a board member of the National Tremor Foundation (UK) and the EPDA.