Alström Syndrome UK Conferences
8th Family and Medical Conference 2005
Report by Mike Hales, Chair
The Weekend of the 22nd / 23rd of October saw the 8th Annual Family Conference taking place at the Birmingham Novotel. As usual there was a clinic held by our medical advisors at the Birmingham Children's Hospital the following day. This was the third occasion the event has been held in Birmingham and arguably the most successful. The Hotel staff are now used to us and our special needs and provided excellent facilities.
There were 12 affected individuals present and representatives from 13 affected family groups. Importantly among the delegates were three new families who had not been before. It was as always a chance for friendships to be made or renewed and for experiences to be shared. After the welcome dinner, an auction raised an excellent £800 for the charity. For the first time in a number of years the costs of the conference were met from the fundraising efforts of a number of our families and supporters. In particular Brian Vasey and Anthony and Victoria Broadly and friends completed the 2005 London Marathon in support of this event.
Following the consensus at last year's meeting, speakers this year were mainly medical or scientific and we were honoured to have some of the world's leading experts. Dr Richard Paisey, (Consultant Diabetologist at Torbay Hospital), gave an overview of the AS condition. Understanding of Alström Syndrome is advancing all the time and this update of current thinking was very welcome. Professor David Wilson, (Department of Human Genetics, University of Southampton and one of the discoverers of the ALMS1 gene), provided a teach in on DNA and genetics as applied to the Alström gene mutation. Professor Graeme Black (Honorary Consultant in Genetics and Ophthalmology at Manchester), spoke about the retinal dystrophy which affects Alström patients. There were many questions from the audience for all of these speakers each one answered with patience and honest explanations of what are often a difficult subjects. A clear hunger for knowledge was satisfied that day. In fact the question and answer sessions went on so long that lunch had to be delayed and the afternoon sessions re-arranged!
After lunch Dr Ian Bennum, (Clinical psychologist Torbay Hospital), spoke about coming to terms with rare diseases and we then heard about Juice Plus+®, a proprietary fruit and vegetable concentrate which might help to improve diet for some people. Appropriately this was followed by Kath Williams and Debbie Hodge, (Nutritionists at Torbay Hospital), explaining the importance of diet and exercise. And just to prove the point we were all persuaded to join in some exercises to experience the benefits for ourselves!
While all this was taking place a group of volunteers took our younger children on a visit to Dudley Zoo. There were several 'hands on' animal touching experiences and many, (including the adult carers), returned with faces artistically painted as wild animals.
The clinic which followed on 24th at the Birmingham Children's hospital allowed patients and parents to discuss their individual concerns and receive the best possible advice.Everyone went home sat