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Structure

EFNA Board members:

Click on a one of the board member’s names below for a short biography:

President – Ann Little

Audrey CravenAnn Little has worked in the in the European and international NGO field for the past 18 years and comes to the EFNA Board with a wide knowledge and understanding of European institutions. She is the current Executive Director of International Bureau of Epilepsy, and during her time there has seen IBE grow from an organisation with 58 member associations to 128 member associations based in 97 countries.

Ann has special responsibility for Communications.

Vice President – Cathalijne van Doorne

In the past, Cathalijne van Doorne held several positions in scientific publishing in New York and Amsterdam and was Head of Internal Affairs in several companies.

Being a member of a family with cerebellar ataxia and having had an education in Medical Biology she became interested in the field of ataxia. In October 2013 she started a blog on ataxia and news in the field of healthcare. During her presidency of the Dutch ADCA-Association, Cathalijne was involved in several projects such as development of an ataxia brochure for health professionals and development of the standard of care for ataxia.

Cathalijne was president of the ADCA-Association in the Netherlands for several years and is board member of euro-Ataxia. She is also a board member of the Dutch Brain Council and is involved in the Platform for Movement Disorders in the Netherlands. Cathalijne joined the board of the EFNA to be actively involved in giving the patients a voice.

Cathalijne has special responsibility for Research.

Secretary-General – Joke Jaarsma

Joke JaarsmaJoke 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.

Joke has special responsibility for Education and Training.

Treasurer – Bea De Schepper

Bea Deschepper
Bea is the co-founder and a volunteer of the Huntington Ligavzw Belgium. At present she is their Vice-President and also the President of the European Huntington’s Association. She was a 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’, as 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.

Member at Large – Manuela Messmer-Wullen

Manuela Messmer-WullenIn her active professional life Manuela worked in different companies and agencies in Europe as Marketing/Advertising Manager and PR Director. Her last active profession was Head of International Communications in Philips Speech Processing, 1992 – 2001. In this role she was responsible for the worldwide introduction of the technology of Speech Recognition and Voice Commands.

In 1997 she became a Stroke Survivor during a business trip. The rehabilitation process and therapies took in total more than 7 years to realise today’s stable situation. In 2001 she decided to leave her paid professional life as she was unable to tolerate the daily work and necessary business travel. So, in 2004 she was asked to take over the Presidency of SHÖ – SchlaganfallhilfeÖsterreich, (Austrian Stroke Self-Help Association), which she founded together with a group of interested patients and professionals. The same year a national umbrella Austrian Self-Help Association for 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 SAFE – Stroke Alliance for Europe, the first European Stroke Patient Organisation with headquarters in Brussels. Manuela played a key role in devising the statutes, the constitution and the mission statement of this group. She also joined the Board from 2004 to 2010. She now acts as SAFE liaison officer and in October 2009 she became an EFNA Board Member.

Member at Large – Klaus Knops

Klaus Knops is an active volunteer for MS Liga Vlaanderen, the National Belgian and the European Multiple Sclerosis Societies.

He spent his professional career as a civil engineer in electro-mechanics at KULeuven, and also held engineering and management positions at large multi-national companies such as Siemens, Volkswagen AG, Hewlett Pack and DVV.

He is now retired but still active as a European Practice Assessment and Maturity Matrix Consultant for family practices.

In his spare time, he participates in a mixed choir: Tourdion.

Member at Large – Nancy Van Hoylandt

Nancy is a volunteer at the European ME Alliance (EMEA) and the Belgian ME Association and is also is a current Board Member of the European ME Alliance.

Together with her Belgian colleagues, she has been working to establish EU contacts at the EU Parliament and the European Commission to raise awareness for ME and ME patients.

For the Flemish Patients Platform, of which the Belgian ME Association is a member, Nancy is a member of the ‘Advisory Department of the Observatory for the Chronically Ill’ which encourages improvements in reimbursement of chronic diseases. This body engages the patient organizations in health care policy.

Nancy’s interest comes from having to deal with the limitations of ME personally and experience of neurological disorders such as Alzheimer’s Disease, Cardio Vascular Accident, Neurofibromatosis and Epilepsy in her own family.

Her degree in Science (lab technician) helps her to understand scientific articles, makes it possible to follow up on research and translate it to others.

Member at Large – Monika Benson

Since 2001, Monika has been affected by a neurological disorder, cervical dystonia. Some time after the diagnosis she became involved in her local dystonia support group and in 2006 she joined the Board of the Swedish Dystonia Association. In 2007, she was elected President of Dystonia Europe. After the maximum term of six years came to an end in 2013, Monika began working as Dystonia Europe’s Executive Director for Dystonia Europe – a position she still holds today.

Before she got involved in dystonia, Monika worked as a Course Coordinator for a school in Lund. Her responsibilities included the organisation of various activities such as lectures, workshops and courses. She speaks English and French and understands Danish and Norwegian.

Monika has four adult daughters, and loves spending time her family and friends. In her free time she enjoys going for hikes in the forest or by the sea. She also likes to swim, dance, bake and read.

Member at Large – Jenny Baker

Jenny Baker retired in 2013 after a lifelong career in the UK’s NGO and community sectors.

Prompted by the loss of her son to a brain tumour aged only 24, her last six years in full-time employment were spent as Chief Executive of the national charity, Brain Tumour UK (BTUK).

Previously, Jenny had worked for over thirty years with the National Trust for Places of Historic Interest and Natural Beauty. In 2005 she was honoured to receive the Queen’s Award of OBE (Order of the British Empire) in recognition of her services to voluntary and community action in the UK heritage and environmental sectors.

Having now finished with full-time paid employment, Jenny has decided to develop a portfolio of activities for ‘active retirement’. She works as a senior volunteer advisor for the International Brain Tumour Alliance (IBTA) helping to foster collaboration and a strong and collective voice for brain tumour patient organisations across the world. She is also a non-executive director of the English Department of Health’s initiative: Healthwatch England – the national statutory champion for patients and service users accessing health and social care services. More locally, she is also Chair of the Board of Directors of Healthwatch Buckinghamshire.

 

Secretariat

Executive Director – Donna Walsh

Donna became the Executive Director of EFNA in June 2012 through a consultancy contract with her company the Sector3Agency. Previously she worked as Coordinator of the European Headache Alliance [EHA] and as Information Officer with the Migraine Association of Ireland [MAI]. She also represented MAI at the Neurological Alliance of Ireland.
Donna’s training is in Journalism and Communications, but she has worked with patient organisations in the neurological sector since leaving university.

EU Senior Policy Officer – Heather Clarke

Heather arrived in Brussels in 1995 and worked as an MEP Assistant in the European Parliament for 9 years. She has been an advisor to global and European health organisations including: European Parkinson’s Disease Association (EPDA); Dystonia Europe; International AIDS Vaccine Initiative (IAVI). Her interest in neurology stems from a friend with a brain disease.

Communications Coordinator – Elizabeth Cunningham

Elizabeth joined EFNA as Communications Coordinator in July 2015. She previously worked on digital media and design projects for the Migraine Association of Ireland and the European Headache Alliance as well as for EFNA and the Brain Mind and Pain MEP Interest Group.
Elizabeth has a personal interest in neurology having lived with migraine since childhood.

EFNA is registered in Belgium as an Association Sans But Lucratif (ASBL) #0543319269 | Website by www.bizify.ie

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