EUROPEAN DYSTONIA

FEDERATION

A union of self-help patient groups from European countries supporting those who have

any form of the neurological movement disorder known as dystonia

EDF Newsletter June 2009

Dear All,

The second EDF board meeting of this year took place in Brussels during the week-end of May 9 and 10. Unfortunately, Anna Moiana from Italy was unable to travel at that time and sent her apologies, but all other Board members were at the meeting.

New Initiative

We had the great pleasure to welcome invited guests from 3 different member groups: Göran Bylund from Finland, Koos Mistrate Haarhuis from The Netherlands, Sölvi Engeland from Norway, together with Lieve Van Gorp and Greet Ruelens from Belgium representing Ruelens-Van Gorp Foundation for Dystonia Research.

The three guests from member groups were invited as observers to let them find out more about the work of EDF and, perhaps, consider the possibility of nomination for election to the board of EDF later this year or in the future. EDF will soon be asking all our member groups to submit nominations of suitable people for election to the EDF Board

EDF Board and elections 2009

The present situation of the EDF board is as follows. Members are elected for a three-year term and are eligible for election for a second term:

President Monika Benson, Sweden - elected 2007

Vice-president - vacant

Secretary Philip Eckstein, UK elected 2007

Treasurer Herman de Craecker, Belgium - co-opted 2008

Member of board Anna Moiana, Italy - elected 2007

Member of board - web-master, Annar Hansen, Norway - elected 2003, retiring 2009.

As you can see we are looking for two new members for the EDF board.

We ask you to consider carefully whether you have anybody within your member group that you would like to put forward for nomination. This is a very important matter and if we want EDF to survive, develop and grow as a European patient organization, we need committed people from our different member groups to work together for this goal. No one can do this on his/her own - it is team work that has to come from a joint European effort.

A formal letter about asking for suggestions of nominations for new board members will be sent out to you all soon by our secretary Philip Eckstein.

New national dystonia patient groups

We discussed the matter of new member groups of EDF and we are looking into contacting doctors treating dystonia patients in Iceland, Greece and Poland to see whether patient groups can be formed. To have as many European countries as possible represented in EDF should be one of our goals.

Finances and Funding

The treasurer went through the finances and, just as at our board meeting of February, it was once again confirmed that funding for 2009 is extremely difficult. Our executive director, Alistair Newton, is working with all the possible sponsors and, although they have shown interest in supporting us, most of the company personnel has changed in the last few years, meaning that many new relationships have to be built up and credibility has to be re-established. The Ruelens-Van Gorp Foundation for Dystonia Research has generously given a grant in support of the David Marsden Award 2009.

Different ideas of how to raise funds were discussed such as:

- trying to solicit donations directly from individuals

- using the EDF portal in trying to raise funds.

- setting up a fund raising working party.

It was concluded that we can no longer depend on regular generous support from the drug companies. We have to secure funding for EDF projects in new ways and from a wider variety of sources.

Dystonia-Europe-2011

Alistair then went on to report on the plans for a follow-up to our successful medical conference in Hamburg, 2008. This will be called “Dystonia-Europe-2011”. After visiting Amsterdam and Barcelona and speaking to the national dystonia groups in Netherlands and Spain, his report recommended Barcelona as the venue of Dystonia-Europe-2011. The Board endorsed this proposal but, before a definite decision to proceed can be made, funds have to be secured. Alistair was tasked with progressing the provisional arrangements of the conference, while he puts the funding in place. It is hoped that definite news will be announced at the October General Assembly.

David Marsden Award 2009

As you have seen in correspondence from the Executive Director, the David Marsden Award winner of 2009 has been announced. The winners are: Dr. Ana Djarmati and Dr. Susanne Schneider of Lübeck, Germany, with their joint paper: “Mutations in THAP1 (DYT6) and generalised dystonia with prominent spasmodic dysphonia: a genetic screening study.”

We were very happy to have received a record number of 21 applications for the prize this year. It is the highest number we have ever received and I think this is very hopeful, as it shows that there are more young European researchers looking into the causes and questions of dystonia. I would like to thank Alistair and our Medical Advisory Board, especially Dr. Tom Warner, Dr. Alberto Albanese and Dr Andres Ceballos-Baumann for their work and advice in selecting the winner. The award will be presented at the EFNS congress in Florence beginning of September, where the winners will have the honour of presenting their paper at the Movement Disorders session. Drs Djarmati and Schneider have also accepted the invitation to come and speak at the EDF GA in October. 

Scandinavian Project

Sölvi Engeland of Norway gave a presentation on an exciting new project taking place across 4 countries in Scandinavia: Norway, Sweden, Finland and Denmark, to solicit information from young people affected by dystonia. I hope they will share this interesting project at the Saturday afternoon session of our GA in October.

EDF GA 2009

The preliminary program for the AGM is set, and together with a letter of invitation, cost for additional participant etc will be sent out to you by end of June. But I can already reveal that the Saturday afternoon will be dedicated to YOU. Each member group will be given 5 minutes to talk about a project, event or anything else that they have done during the last year and that could be inspirational to the other delegates. So please think through if there has been, or is something special going on in your member group, that could inspire somebody else. We are looking forward to a couple of hours of great sharing of many interesting ideas between ourselves. Since it is only 5 minutes per group we cannot allow any power point presentations. We also would like to ask you to bring any printed material, leaflets, brochures that your organization has produced. On Sunday morning we will have a big table of Dystonia material from our groups and we hope that this can also be a way of providing and sharing ideas.

I would like to thank Dr. Tom Warner for his efforts in helping our Executive Director to create a very interesting and varied programme of speakers for the GA.

EDF Members’ Directory

An updated Directory of EDF Member Groups has now been printed, and was available on the EDF table at the Movement Disorder Society congress in Paris earlier this month. Copies will be handed out to you at the GA in Brussels. If you need copies before that please let me know and I will send them to you.

I wish you all a wonderful and relaxing summer and I am looking forward to seeing you all in Brussels in October.

Warm regards

Monika Benson

EDF President

EXECUTIVE DIRECTOR’S REPORT

March to June 2009

March – In March I travelled to Brussels to visit two pharmaceutical companies on behalf of EBC – Pfizer and Solvay. As these were not marketing and sales managers, but senior public affairs officers, I suggested that EDF would appreciate some support – in the concept of the greater good of neurology, even though neither company has products which are used for dystonia. I also spent time with the EFNA and EBC accountants.

April.- I attended an EFNA Board meeting in London and an EBC Board meeting in Brussels. As usual, while in Brussels, I took the opportunity to stay for several days and arrange other meetings, including one with the Chief Officer of 3Win, the company from Antwerp which will market a new form of DBS from 2010. I also travelled to Amsterdam to assess the possibilities of that city for Dystonia-Europe 2011.

May – I travelled to Barcelona, where Ana Sanchez Sanchez, her husband Jesus Escalantes and a neurologist, Dr Francesc Miguel from the ALDEC Medical Advisory Board spent two days introducing me to hotels, congress centres and conference managers. I then travelled to Brussels to the EDF Board meeting.

June –At the MDS congress in Paris, EDF was prominent in a small line of booths for patient organisations. A good number of our leaflets and Members’ Directories were picked up. However, congresses are most useful for EDF in terms of networking and, in Paris, all of our sponsors had large exhibition stands and all were very welcoming. At last, it was possible to meet some of the new people in the companies who are involved in our end of their business. Because each company is spread out over several sites in many countries, with so many staff changes in the last few years, our relationships with them have become very difficult. I am very glad to say that much of this ‘confusion’ has been resolved by my being at the congress and having the opportunity to talk to many of the people who are our prospective contacts and sponsors. In addition, the size of the congress seems to be increasing, as more than 4,600 neurologists registered for the event.

I made contact with new managers at Allergan, Ipsen, Eisai, Merz and Medtronic, and had discussions on possible collaboration with all of them. Further meetings are planned and will be reported in future reports

St Jude Medical – This is an American company which is a rival to Medtronic in DBS for Parkinson’s and is looking very seriously at dystonia.. They already have a European office in Brussels and they will probably join the EBC Industrial Board. They exhibited at the Movement Disorders Society congress in Paris and I will keep in contact with their European Director.

Argentina – I was approached by an Argentinian neurologist Dr Frederico Micheli who has obtained funding from Ipsen Mexico to produce a glossy book with ‘artistic’ photographs of dystonia patients and their symptoms. These will be circulated to ‘notable’ people who will then be asked for their comments on what they see, and these comments will be published with the photographs. The idea is to raise awareness. The idea has appeal, I think, and they will send me more details soon as they want EDF’s support. I have already offered some ideas and I suggest that we seriously consider support (not financial).

David Marsden Award 2009 – After delaying the deadline for submissions by one month, we received a record number of applications, and 21 papers were sent to the Medical Advisory Board early in May. Unfortunately, Prof Philippe Coubes replied to say that he did not have time to mark the papers and, then, in a later email, he resigned from the MAB and acknowledged that he just did not have time to fulfil the responsibilities of the post. The result of the Award evaluation has been advised to all member groups by email and in the President’s newsletter.

Dystonia-Europe 2011 – As requested by the EDF Board, I prepared a preliminary report and recommendations, based on the experience of the Hamburg meeting, research on possible venues and taking into account the views of many dystonia specialists, including the Medical Advisory Board. This was presented at the May Board meeting and the recommendation of Barcelona in October 2011 was accepted in principle. The big caveat is, of course, that funding must be put in place before the process of programme, publicity, signing contracts with the venue, conference managers, caterers, etc., can begin. It is hoped that this will be confirmed by the time of the EDF GA in October 2009.

Eurodystonia – A new research collaboration. I attended a meeting in Paris, of a small group of specialists who are forming a new research group for dystonia in Europe. This is in the early stages, but I have indicated that EDF would wish to support it in any possible way, apart from funding. The core group of specialists includes: Alberto Albanese, Tom Warner, Thomas Gasser, Joaquim Krauss, Justo Ybenes, Marie Vidailhet. I will be kept informed and I have already agreed to facilitate a meeting of specialists in the autumn 2009.

Dystonia Guidelines for Diagnosis and Treatment – Prof Alberto Albanese has been asked by European Federation of Neurological Societies to bring a group of specialists together again, to re-write the guidelines on dystonia, which were created in 2004/5. I have again been invited to take part in these discussions and a preliminary meeting was held in Paris during the MDS congress. A further meeting has been convened during the EFNS congress in September.

Alistair Newton - June 2009

Secretariat

69 East King Street, Helensburgh, G84 7RE, United Kingdom

Tel/Fax: +44 1436 678799. Email: sec@dystonia-europe.org

Registered Address: Zwepe 14, B-9991 ADEGEM, Belgium. www.dystonia-europe.org

Executive Director: Alistair M Newton