Conference 2009
12th Alström Syndrome UK Family Conference
The Crowne Plaza Hotel, Leeds
7th November 2009
Members attending Conference
Delegates at this year’s Family Conference were met by unusually wet Leeds weather. Undeterred, the children and the ever-helpful volunteers got suitably wrapped up and headed to Hull, to explore the mysteries of “The Deep”, a state-of-the-art aquarium. The envious conference delegates gathered in the Roundhay Suite and caught up on gossip, before a packed programme got underway. I got proceedings underway, reminding everyone that it was the 50th anniversary of Alström Syndrome, as Carl Henry Alström first described the syndrome in his paper of 1959. It was also my privilege to announce that we had been awarded a Big Lottery Fund grant of £344,000.
The first talk of the day was given by Vernon Long, Consultant Opthalmologist at St James’ Hospital Leeds, on “How Alström Syndrome affects the eyes”. Vernon gave a description of how retinitis pigmentosa develops, and how this affects vision. At the end of his talk he described some exciting developments within the ophthalmology field, particularly using gene therapy to treat retinitis pigmentosa, and also the trials of retinal implants known as the “artificial retina”. Next up was Richard Smith, Consultant Nephrologist at Southmead Hospital Bristol, who gave an excellent talk on the normal function of the kidneys, and the tell-tale signs that things may be going wrong with them. A lively question and answer session followed.
The next session was filled by clinical updates from Richard Paisey, Tim Barrett, and Rob Cramb. Richard impressed on the audience the importance of an active lifestyle for the effective management of Alström Syndrome. He also raised some interesting questions about the unexplained aspects of the syndrome, especially the effects on smooth muscle and the occurrence of organ fibrosis, and how this may be linked to diabetes. Tim described a PhD project within his department which is investigating why we make certain food choices, why some people are always drawn to fish and chips instead of the healthy option! He also outlined some new tests that were planned for patients at the children’s clinic, including long-term blood pressure measurements and tests for a molecule called brain natriuretic peptide (BNP). Rob Cramb, who is a Clinical Pathologist at QEH in Birmingham, described his vision of the future of young adults’ clinics when they transfer to Birmingham in April 2011. Rob is relatively new to Alström Syndrome, but he described how he and other members of the QEH team are attending clinics at Torbay, to become thoroughly familiarised with the patients and their needs. He also stressed how important it was that people help him, by saying what they want from the clinics at Birmingham and how the new hospital and its staff can be best readied for the arrival of the clinics.
After lunch, Kevin Goodwin gave an update on the Young Adults group, and how he hoped they would communicate better in the future. Gulshan Karbani, a Genetics Counsellor at St James’, gave a fascinating insight into the factors involved in the genetic inheritance of Alström Syndrome. She also described the complex issues around how genetic conditions are considered within the UK Asian community. Mary Glover, a Clinical Counsellor at Birmingham Children’s Hospital, described the counselling relationship as being like a journey. She stressed the importance of having dreams, and making plans in order to live with complexity and uncertainty. Finally, Julie Ryder from the HearFirst Project, described her experiences of losing her hearing, and how this inspired her to start HearFirst to help other hearing impaired people. HearFirst provide Deaf and Disability awareness training, and Julie has planned a one-day course in dealing with hearing impairment and communication in Alström Syndrome. Julie circulated a questionnaire, to gather information on how this can be done most effectively.
The afternoon was completed with the AGM, where the Directors gave more details of ongoing projects including fundraising and research. We thanked Julia Scott for her excellent work in raising funds over the year, and also Kerry Leeson-Beevers for all her hard work organising a fantastic conference. In the evening everyone got together for the Dinner and Charity Auction. The expert auctioneer was John Parkinson, ably assisted as ever by JJ, and the star donation was a signed rugby ball from the New Zealand Rugby League team, who were also staying at the hotel.
I’d like to give a big thank you to everyone who attended, and made this an excellent and enlightening Conference.
Dan Jagger,
Chair, Alström Syndrome UK
Conference Presentations
Here is a list of presentations given by some of the conference delegates available to download.
Vernon Long, Consultant Opthalmologist St James’ Hospital Leeds:
Richard Paisey, Diabetic Endocrynology Torbay Hospital:
Mary Glover, Clinical Psychologist Birmingham Children’s Hospital:
More presentations will be posted if and when they become available, so please keep checking for updates to the list.
