EDF Newsletter - March 2009

 

Dear Friends,

 

The first EDF board meeting of this year took place in Brussels on February 7th and 8th. The members of the board arrived on Friday 6th, eager to get together and start the work of 2009.  We had full day’s session on Saturday and finished on Sunday 8th at lunch time.

 

As usual there was a lot on the agenda and several matters to discuss in real depth. One of these was our idea of last year that a short newsletter might be published every month. After considering all aspects (especially the very helpful points raised by Richard at the GA2008), the board agreed that it is not practical to fulfil this wish and we therefore decided to send out a newsletter after each board meeting. In these newsletters we will make a special effort to cover the issues raised at the Board meeting so that you will get a good idea of the work which the Board is dealing with and what actions are being taken. Together with a summary from the Executive Director of what is going on for EDF at the European level we hope that you will get sufficient information from the board, and if not, please let us know.

 

Our intention is to improve the communication throughout the year between EDF and member groups. The traditional Update will be published once a year (in December) covering the AGM. If your national group has held a dystonia day/week/event that could be of interest to any other groups I would really appreciate if you could write a summary and send it to me so that we could publicise it on our website. The most recent event among member groups that we publicised on the EDF website is the 4th Catalan day of Dystonia held in Barcelona in November of 2008.  I would like to see our website being updated regularly and more used between member groups and EDF for sharing information, ideas etc.

 

Alistair Newton gave the board a final report of Dystonia-Europe-2008. It was once again concluded that the congress was a big success, very much due to the dedicated work of Didi Jackson and Alistair.  Despite general funding difficulties in 2008 and the fact that this was EDF’s first large-scale medical conference, we were delighted to hear that we made a small surplus in the finances of the event. Due to all the positive response after the congress the board is hoping to aim for a new Dystonia-Europe, hopefully in 2011.The board gave Alistair the task to look into the possibilities and prepare a report/outline plan.  A final decision about the event will be made at the next board meeting in May.

 

EDF general budget and finances were looked at and it was concluded that there was an overall surplus of €7000 in 2008. The board is very pleased with Alistair’s very difficult and time-consuming work of getting funds for both the congress and EDF core activities in 2008. Considering the present economic world crisis, we are very well aware of the likely difficulties that we may have this year in finding sponsors.  Therefore, the budget was revised and we carefully looked into cutting the costs of EDF this year without giving up on our goals. Among a number of other things, we know from experience that organizing a GA in Brussels tend to be less expensive and the board agreed that it would be the wisest idea in the present circumstances.

 

The EDF GA of 2009 will be held in Brussels from 14.00 Friday October 2nd until 12.00 Sunday October 4th.  Please mark these dates in your agenda and start thinking about your travel plans.  We are planning to have scientific lecturers and a work-shop for participants and, of course, a social event on Saturday evening.  More information on the programme will follow in the next newsletter.  We hope that many delegates and members will be able to join us for this annual EDF event. It is always an excellent opportunity to meet and share experiences and ideas.  As always, EDF will cover the cost of two nights’ hotel, two dinners and lunch on Saturday, for one delegate from each member group.  Costs for additional delegates will be advised to you shortly.  

 

Thank you all for submitting updated contact information from your member group. The members’ directory will be revised and printed in the next few weeks. As soon as they are ready, 10 copies will be sent out to each member group and if you need more please let me know.  The main reason for the publication of the EDF directory, of course, is to publicise EDF and its member groups at medical and other conferences, especially when EDF has an information stand.

 

The supplement to The European Journal of Neurology, with abstracts from Dystonia-Europe-2008 has not yet been produced because of difficulties in obtaining the abstracts from some of the speakers. Dr Tom Warner and Dr. Dirk Dressler, who are in charge of this matter, have now been asked whether it is possible to produce a supplement from the abstracts received to date.  Everyone who attended the conference will receive a copy in due course.

 

An updated version of our leaflet “Dystonia the Facts” is also being considered, with the hope of having it ready by the GA in October.

 

As you know, the David Marsden Award is awarded every two years to a young European researcher/doctor in the field of dystonia, and 2009 is one of those years!  We ask you to publicise the information about the award on your website and amongst researchers in your country.  You will find the information about the award on the EDF website.  We would like to see as many applicants as possible and we are very grateful for any help that members can give to encourage scientists in your country to apply.  This is also an opportunity for your national group to show that patient organisations are doing positive things to work in partnership with the medical profession.  The award will be presented at the EFNS congress in Florence in September, where the winner will be able to make a presentation to a large audience of movement disorder experts, and then – again – at our own GA in Brussels. 

 

The next board meeting will take place on May 9th and 10th in Brussels. We have invited 3 potential new board members to come and join the meeting and see what the EDF work is about. The people we have invited are: Göran Bylund from Finland, Koos Mistrate Haarhuis from the Netherlands and Sölvi Engeland from Norway. The EDF board hopes that these delegates will be encouraged to be proposed for election to the board at the next GA.

 

On Saturday afternoon Annar Hansen from Norway led the board through a very productive planning session to identify the highest priorities for EDF between 2009 and 2011. The session used the A-B-C-D format i.e. Achievements - Benefits - Concerns - Do next. In summary the main objectives for the future were identified as:

 

1.  Staging another Dystonia Europe conference in 2011 - building on the success of DE-2008.

2.  Improving levels and quality of communication between the EDF board and the boards of the member organisations.

3.  Staging General Assemblies that contain useful working sessions but also continue to provide delegates with networking/social opportunities.

4.  Finding better ways of identifying and developing the range of skills among EDF board members and potential board members by allocating responsibilities and recruiting people more effectively. 

 

The next newsletter will be issued in May, after our board meeting. Until then I wish you all good luck in the work that you do for people with dystonia in your country. You can always contact me if you have any thoughts or ideas about the work of EDF.

 

Take care!

 

Warm regards

 

 

Monika Benson

EDF President

 

 

 

DYSTONIA IN EUROPE – REPORT FROM BRUSSELS

 

Background

The work of EDF takes place in several main areas, and the Executive Director is employed, for 3 days each week, to deal with almost all matters relating to the existence and activities of the organisation.  Apart from the legal, fundraising and administrative work, relationships with the medical profession and organisation and control of any EDF projects or meetings, the efforts to provide a voice for dystonia patients in Brussels are among the most complicated and time consuming.

 

Many other organisations in Brussels, similar to EDF, have discovered that decision-makers at government level work more easily and effectively with a broad union of organisations focussed in a single large area of healthcare, rather than a group which represents only one illness.  Unless the illness is VERY large-scale (such as Alzheimer’s), it is possible to work effectively only in collaboration with others, and EDF does this as a member of EFNA (European Federation of Neurological Associations).   www.efna.net   

 

Politicians are interested only in the “Public Health Agenda”, which is a way of describing matters of health which affect all, or a very large number of European citizens at any one time. Through EFNA, EDF has access to many more decision-makers and important medical specialists than would be possible as a single organisation.  EFNA is a very active member of the European Brain Council, and the importance of both organisations in neurological research and in forming relationships with the European Commission is a clear example of the success of following this principle of partnership – www.europeanbraincouncil.org (EBC).  By working from this point of view, EDF has established itself as part of the neurological ‘community’ in Brussels, and is active in many areas.  Quite simply, being active in the work of EFNA and EBC gives EDF a position it could not have otherwise.

 

The following is a brief resumé of the Executive Director’s activities “at the European level” over the past few months, apart from the everyday administrative and organisational duties described above.  Details of the projects and activities of EFNA and EBC are too long to include here and can be found on the organisations’ websites.  It should be noted that EFNA and EBC cover all the travel and other expenses of EDF’s Executive Director for their activities:

 

“European” Activities

October 2008 – After our very successful medical conference in Hamburg, and EDF’s 2008 General Assembly, I attended an EFNA Board meeting and strategy session in London, followed by the launch of a book, published by EFNA “Caring in the Comfort of Home”.  The launch took place at the House of Commons and was hosted by leading Members of Parliament and of the House of Lords.  

 

This publication is a very practical handbook for family members and other carers and it is intended that the UK edition will be translated into other European languages and cultures.  It has already been reviewed very positively by a number of magazines and care organisations.  Healthcare groups in Spain, Sweden and elsewhere have already started negotiations to create their own national editions.  

 

I also travelled to The Dystonia Society’s (TDS) 25th anniversary event, in the City of London, attended by her Royal Highness, the Princess Alexandra, Royal Patron of TDS.  I was invited to the event as a Life Honorary member of TDS and also to represent EDF.

 

November 2008 – The EDF President and I attended a patient workshop in Brussels, organised by the Medtronic Foundation, and which I had helped the Foundation to plan over the previous 3 months.  It was a useful event, both in terms of the programme and the opportunity to meet other patient group leaders and several key employees of Medtronic and the Medtronic Foundation.  Ute Kühn and Helga Mueller from Deutsche Dystonie Geselleschaft were there, as were Alan Tamlyn and Sue Day from The Dystonia Society, and Richard Schierl and Christa Hafenscher of the Österreichische Dystonie Gesellschaft, along with 35 other people representing many different patient organisations from Parkinson’s disease to bowel function.

 

I stayed on in Brussels for EBC meetings at the beginning of the following week.  I am Treasurer of EBC.  First was the Industrial Board meeting, where 25 pharmaceutical and medical device companies come together in support of the work of EBC in brain research.  This was followed by Management Board and General Assembly meetings.

 

On behalf of EFNA, I travelled to London to assist at the first board meeting of the new UK Restless Legs Syndrome group (RLS).  This is part of an EFNA project which is bringing together all the RLS groups into a European federation.  EFNA has already done this for Stroke groups and Headache groups, and similar projects are under way for Neuropathic Pain and one or two very small-scale illnesses.

 

December 2008 – We received more detail of the Hamburg conference from the conference managers, Interplan, and an interim financial statement which suggested that we might be close to ‘breaking even’ financially on the congress budget.

 

EDF had agreed, for the third time, to sponsor the costs of a session at the biennial International Paediatric Movement Disorders conference in Barcelona, to be held in February 2009.  Unfortunately, this conference had to be cancelled by the organisers due to lack of industry support.  This was very sad and a setback to the efforts to improve medical understanding of childhood dystonia.  We were glad that our Hamburg conference had been funded well before the international financial problems began.

 

Funding and industry partnership in 2009 – I continued to be in contact with people from all of the five companies from which we now hope for sponsorship: Medtronic, Eisai, Merz, Ipsen and Allergan.  Most of the European-level contacts are fairly new to the companies, or to dealing with dystonia patient groups, so there is a steep learning curve.

 

January 2009 – I spent several days in Brussels, dealing with accountants and auditors for EBC and attending EBC Board and Industry Board meetings.  Later in the month, I attended a two-day EFNA Board meeting in London.

 

February 2009 – Early in the month, an EDF Board meeting was held over two days in Brussels.  I also spent time in other meetings to discuss possible actions towards dystonia research in Europe and I travelled to the Netherlands to meet a board representative of the Nederlanse Vereniging van Dystoniepatiënten.   A few days later, as the EDF delegate, I attended a meeting in Brussels of the EFPIA “Think Tank”!  This is a group of about 25/30 delegates which meets 4/5 times each year to discuss issues affecting health, which are being discussed in the European Parliament or at the Commission.  It is formed from patient organisations and the pharmaceutical industry (at the European level only).  EFPIA is the European Federation of the Pharmaceutical Industries and Associations, which is an important body in health matters in Brussels and has many contacts and projects with the European Commission and the Parliament.

 

Also in February, EFNA and EBC organised a surprise dinner in honour of John Bowis, a Member of the European Parliament who has been extremely supportive of both organisations and the work they do.  He is due to retire from the Parliament at the forthcoming elections in June 2009.

 

Later in the month, EBC held its second annual Forum - “Depression and the European Society” in Brussels, attended by Members of the European Parliament and representatives of the Commission, as well as many leading doctors, health economists, healthcare professionals and patients from across Europe.  This conference was held in the form of a debate, with each speaker in each session having only 5 minutes to give their presentation before the discussion.  A professional moderator walked around the audience to make sure that everyone, including the patients, had an opportunity to be involved in the debate.  Much useful publicity was given in a number of influential newspapers and magazines in several countries, including a front page article in Die Welt and two pages in the current edition of (European) Parliament Magazine!  Last year, the topic was “Parkinson’s Disease and the European Society” and the point of such an approach is that, for instance, many dystonia patients suffer from depression and many Parkinson’s patients suffer from dystonia.  Having a real debate on the wider aspects of such illnesses, rather than the usual long presentations only on scientific topics, is a much better way of influencing policymakers about the real issues which patients have to deal with every day of their lives.

 

Alistair Newton

Executive Director