Medical Professional Conference Hosted by A.D.D.E.R.

As you will be aware last year was A.D.D.E.R.'s 10th anniversary.
We did a few things to celebrate this for example we held a Members Day (combined with the A.G.M.) which consisted of a free lunch and some entertainment.

We also had a great effort by our very fit fund raisers some of whom ran the Great North Run and some ran much more than that, one in particular being Keld O'Shea.

We also set off Miss D Y Stonia on her merry way doing a virtual walk around the world raising much awareness on ‘her' way.
One more event we hosted was a conference for Medical Professionals held in The Marriott Hotel in Gateshead in October 2009.

The day took a great deal of planning and of course fund raising, these events are not cheap to run! We did manage to secure funding though, mostly from Gateshead Council in the form of a grant but we also got funding from some of the drugs companies who produce botulinum toxin.
When the day finally arrived I think we were all a little nervous about how successful it would be, especially considering the amount of time effort and money it had taken to arrange the event.

We did our best to make the day efficient and of course professional. We had a conference room set up in theatre style with the speakers at the front and we also had a separate room for refreshments and finally we had a side room for organisations who wished to have their own information stand.

The speakers we had booked all gave their time free of charge and included dystonia specialists, physiotherapists, eye specialists and dystonia nurses. The attendees were all medical professionals too, G.P.s, nurses, physiotherapists and occupational health therapists to name a few.
One massive disadvantage we had was that we held this event at the beginning of the swine flu scare and unfortunately a lot of N.H.S. staff were not allowed to attend because of this, making our numbers much less than the 100 expected. I think we actually had about 40 attendees, fortunately all the speakers managed to attend.

The event was opened by our lovely Chair Person, Anne, and then the speakers took their turn one by one with various members of the audience coming and going as their time allowed. Mr Hawthorne entertained us with tales of how he became involved in the treatment of dystonia and he was followed by Miss Nicholson who spoke about deep brain stimulation and its application to patients with dystonia.

We then enjoyed talks on the genetics of dystonia by Professor Chinnery and the epidemiology by our own Dr Butler they were followed by Miss Dayan who gave a very interesting talk on the treatment of blepharospasm.

We also listened to a talk on the Jehovah Witness view on botulinum toxin therapy, something I personally had not even considered but found very interesting. The afternoon continued with a talk and a demonstration of therapeutic massage by Neil Goodenough and finally the afternoon was finished off with a more light hearted talk on the use of botulinum toxin as a beauty therapy by Ms Beverley Aston.

Each speaker spoke about their particular specialism and how that specialism helps people with dystonia. The audience was given lots of opportunities to ask questions and to take part in each discussion we even had a small practical demonstration with someone showing his massage technique on our president, Verona.

The refreshments were very welcome, although 100 bacon sandwiches mid morning for 30 - 40 people was a bit too much!! We also stopped later in the day for a very nice lunch of soup and a sandwich during which time we could all mingle and ask questions that perhaps had not been asked during the lectures.

The day was also attended by the Mayor of Gateshead, Mayor Eagle, and he took the time to say a few words to the audience about why he chose A.D.D.E.R. as one of his charities for his year of office. He stayed as long as he could and had some lunch with us, answering yet more questions of course, but then he had to leave to attend his next function.

All in all it was a lovely day with some excellent speakers; I have to say that I personally learnt quite a lot; although not being a medical professional some of the information was rather too technical for me!! We got some very positive feedback from the medical professionals who attended, they all felt they had learnt something too, things they would be able to use in their professional life when caring for people with dystonia. Some members of the audience enjoyed the event so much they requested that we organise another one for more of their colleagues to attend. Something for us to aim for this year if we can get the funding.

The main aim of the day was to raise awareness of dystonia amongst the medical profession and I think you will agree that this aim was achieved. Many thanks to our excellent speakers for the support they have shown us and continue to show us, and many thanks to the people who took the time to attend, I hope they have passed the word on to their colleagues, next time we host an event like this we want all the bacon sandwiches eaten!!

Gill Ainsley
A.D.D.E.R. Volunteer