The Formalities

The organisation was formed as an association of national dystonia patient groups in Spoleto, Italy, on 18 June, 1993.  The name was European Dystonia Federation (EDF) and the office address was at The Dystonia Society, in London.  In 2003, EDF was formally registered in Belgium as an Association International Sans But Lucratif (AISBL) a not-for-profit organisation – and the registered address (‘siege’) at an address in Brussels.

At the General Assembly in Barcelona on 23 October, 2011, the delegates accepted the Board’s proposals to modernise the organisation and to change the name to Dystonia Europe (DE).  The focus of activities also changed, to allow DE to provide a more effective ‘platform’ for partnerships for dystonia with scientists, patient organisations and others.  The legal process was completed in 2012, with our registered office remaining in Brussels.

The World of Patient Advocacy in 1993

Dystonia – unknown to many people

Many people reading this in 2018 might not understand that dystonia wasn’t well-known or well-understood twenty-five or thirty years ago.  In the1980s and early 1990s, there were still very few specialists with knowledge of dystonia, and diagnosis and treatment were very hard to find in most countries across Europe.  We needed to find ways to stimulate interest in dystonia among the younger clinicians and researchers.

Dystonia is a small-scale illness with relatively low numbers of patients – only one of a group of neurological movement disorders, a group which forms only a small section of all neurological illness.  Neurology itself, although extremely important in terms of human brain function, forms only a small proportion of the total of all medical conditions – in numbers of patients.

Dystonia prevalence in the context of other illnesses

Many estimates of the total number of human illnesses suggest that there are around 30,000 and some of them have huge numbers of patients across the world.  WHO (World Health Organisation) data tells us that there are more than 600 neurological illnesses affecting almost 1 billion people in the world.  

Accurate estimates are difficult to calculate because of lack of data – even for the “big” illnesses.  For epilepsy, the estimated number of patients is 50 million.  For the dementias – 24 million.  Parkinson’s disease is estimated to have perhaps 10 million patients.  The world figure for dystonia, based on estimates in Europe, would be around 6 million.  But there is not enough clear data available on which to base a reliable total number.  

Dystonia patient groups in the early 1990s

“Patient advocacy” was just beginning in many areas of health.  Very few national dystonia patient groups existed in Europe, and almost all of those were only a few years old.  All of these groups started by focussing on the important basic functions of providing contact between patients, good information on the illness and how to find a diagnosis – “patient support”.

More advanced ‘advocacy’ was the next step.  Representing the interests of patients by providing useful and credible information to healthcare providers and decision-makers on what support and treatment patients and their families really need.  

The need for partnerships in dystonia

In 1993, it was clear that national dystonia patient organisations in Europe should come together in partnership to learn from one another.  They also needed to promote the interests of their members with healthcare decision-makers at all levels, including the European Union.  

Although, in the EU, healthcare is considered to be an issue for national governments, many decisions are made in Brussels which affect aspects of healthcare in all member states.

European Parliament – Brussels

The stimulus of some specialists in dystonia – Professors Fahn and Marsden

By the 1980s, the level of knowledge of dystonia was still low among the majority of the broad medical profession.  But two specialists in particular began to bring colleagues and young neurologists into their sphere of interest – dystonia. 

Stanley Fahn in New York and David Marsden in London had both developed clinical and research interests in dystonia and movement disorders generally.  They became good friends and close scientific collaborators on dystonia and other topics.  Prof Fahn remains a very senior world figure in movement disorders, and a strong supporter of patient advocacy.  Sadly, Prof Marsden died suddenly at a relatively young age in 1998, but his reputation lives on as a pre-eminent scientist in his field.  His crucial work in establishing dystonia as an organic illness is commemorated by the David Marsden Award.  Created by Dystonia Europe in 2003, this Award is presented every two years for the best scientific paper on dystonia from a young scientist.

Prof David Marsden

By the mid 1980s, Profs Fahn, Marsden and others had the idea to form a worldwide scientific organisation to promote Parkinson’s disease, dystonia and other movement disorders.  That was the beginning of the Movement Disorder Society, which has grown to be an extremely influential global professional association.

Why did we need to create a pan-European patient organisation in 1993?

• The illness was not well-recognised and diagnosis and treatment were difficult to find .  
• Drugs and surgery had been tried by the few dystonia specialists, but with limited success.  
• Botulinum toxin was only starting to be used in some European countries in the early/mid 1990s.  
• Only a few patient groups existed, they were very new and still trying to establish themselves.  
• Many of the national groups focussed on only one type of dystonia (blepharospasm, torticollis, dysphonia, etc).  
• We needed to work together as patient advocacy groups and become more ‘professional’ in our activities.  
• Clinicians and researchers were working in international partnerships more and more and we needed to create a unified organisation of patients to work with them in a professional way.
• The influence of European Union decisions on national practices was increasing in the field of health.

The Founding of EDF – Spoleto, Italy, 18 June 1993

This process took almost a year, with our first contacts at a workshop in Munich, followed by two preparatory meetings in Barcelona and Paris. 

It should be mentioned that, in 1993, international communications were much more basic than they are today.  No email.  No mobile phones.  No SKYPE.  No internet available to the public.  Certainly, no Facebook…..  We used the telephone, ordinary mail and fax machines.  Sending a 10-page fax to 12 or more people in different countries took a long time and was also quite expensive!

The Founding Committee of European Dystonia Federation in 1993

Back row: Didi Jackson, Germany; Alistair Newton, UK; Feli Justo Alonso, Spain; Alan Leng, UK; Gunilla Noren, Sweden.  Front row: Tore Wirgenes, Norway; Jean-Marc Bildan, France; Laura Latini, Italy; Maja Relja, Croatia; Beppy Smitshoek, Netherlands. Absent: Kai Naunung, Denmark. 

The Management of the Organisation Over 25 years

Board Members and Officers

I was honoured to be elected at the Spoleto meeting as the Founder President and Laura Latini from Italy became Vice President.  Alan Leng, Chief Executive of The Dystonia Society, was appointed as Secretary-General – an unpaid role which he filled with energy and skill until 2001.  After a few years, Feli Justo Alonso from Spain followed Laura as Vice President, then Didi Jackson from Germany who later became President and served with enthusiasm, grace and dignity for 6 years in that position, until she retired in 2007.  Didi, sadly, passed away quite recently, in February 2018.  

Prof Maja Relja
Maja Relja from Croatia, pictured above in Spoleto, became our Vice President in 2012 and has only recently retired from that post.  She has been a constant and positive presence for European Dystonia Federation/Dystonia Europe since 1993, and remains a warm and supportive friend as a member of our Medical and Scientific Advisory Board.  

Dr A G Butler (“Ginger”)
Ginger Butler, was a very warm and larger than life character from the North East of England, with a deep wish to help dystonia patients.  He contributed greatly to our Board meetings, as Vice President from 2001 to 2008 and again, as a Board Member, from 2009 until 2012.  Despite having no earlier training in medical science, he gained a PhD based on epidemiology in dystonia and carried out several dystonia research studies before he passed away, sadly and unexpectedly in 2012.

Readjustment of Board responsibilities in 2001
By 2001, it was clear to me that the hugely increased workload of the President could no longer be continued by one person alone, even though I had taken early retirement from my business career some years before.  Fundraising, daily financial control, all documentation, website, legal, accounting, publicity, very frequent travel to Brussels and many other countries, all had become impossible to sustain.

A strategy plan was created, to restructure the organisation, employ a part-time Executive Director, and ensure that the Board members took more responsibility for decisions.  I had intended to retire completely at that point, but the Board asked me to remain and take the position of Executive Director, to provide continuity.  With the new distribution of responsibilities, this was a realistic solution and I retired from the Presidency at the General Assembly in 2001, to become the first Executive Director.

A new beginning for European Dystonia Federation
In 2006, one year before Didi Jackson’s term of office as President would end, there was no obvious successor.   Then, at the 2006 General Assembly, we met a new delegate from Sweden, Monika Benson.  It was clear from that first meeting that Monika had the personality and capabilities to lead our federation into the next stage of its life, and she eventually agreed to be nominated by the Swedish association.  Monika was appointed as our President in 2007.

Many things in the world had changed since 1993 and, after a period of ‘settling in’, Monika began to make differences in our approach to match the new generation of people, organisations and institutions which had developed.  We changed the name and ‘image’ from the old blue and white to a much warmer and more modern presentation of colours and messages for Dystonia Europe, on a new website and letterhead.  New activities and projects followed and our members, dystonia clinicians and researchers, partner organisations and our sponsors all responded very positively.

When Monika’s term of office as President ended in 2013, the post of Executive Director was vacant, and she agreed to be appointed to the job, to provide continuity and support the new President, Robert Scholten, from The Netherlands.  Robert decided to retire from his post after one term of office, and Merete Avery from Norway was appointed as President in 2015.  Merete has already provided great stability and, no doubt, some future historian will comment warmly on her very hard work after her term of office ends!