WHAT'S NEW
Flora London Marathon on Sunday 13 April 2008. Mr Martin Snead, Consultant Ophthalmologist at Addenbrooke's Hospital, will be running in the Flora London Marathon on our behalf. This is his fifth and final marathon and we would like to make it special by collecting as much money as possible. Please sponsor him if you are able. This can be done easily by following the 'Make a Donation' link via the Bmycharity website.
Revised 'Eye Involvement within Stickler Syndrome' booklet. This information booklet has been revised as at April 2008. Please see the 'Other Information' page.
PREVIOUSLY ON WHAT'S NEW ....
New edition of the book 'Stickler - The Elusive Syndrome' and a new DVD entitled 'Stickler Syndrome: Learning The Facts' were launched at the SSSG 2006 Weekend Conference. The book is an update of the original edition published in 1995. The DVD is the first in a series of films on the condition.
Details and ordering information for the new edition of the book 'Stickler - The Elusive Syndrome' can be found here and details and ordering information for the DVD 'Stickler Syndrome: Learning the Facts' can be found here.
SSSG 2006 Weekend Conference will be held from Friday 3 - Sunday 5 November 2006 at the Lea Marston Hotel, Haunch Lane, Sutton Coalfield, Warwickshire. Exciting highlights will include the launching of a new edition of the book, Stickler The Elusive Syndrome, AND the first of a series of films on the condition entitled 'Learning The Facts.' This is a general information film and is aimed at newly diagnosed patients and their families, teachers and the healthcare profession in general, and will be a useful addition to the literature that we already have available.
The conference will begin with a welcome drink on Friday 3rd November followed by evening meal and a chance for members to socialise. Saturday will be a very full day with the launching of the first of three films about Stickler Syndrome entitled "Learning the Facts" and a new edition of Wendy's book, "Stickler The Elusive Syndrome". We are unable to give you a detailed programme at this time but we anticipate having presentations from the 'Cambridge Team', a maxillofacial surgeon and a professor of rheumatology. After an evening meal there will be ample chance for members to relax, socialise and share experiences. On Sunday morning we shall have a very short AGM, and we are hoping to have a surprise item that will be of interest and an inspiration to all. The conference will end with Sunday lunch.
SSSG Members Day in the south of Manchester on Monday 4 April 2005 which is in the Easter Holidays. It will be held at the Sir James Black Conference Centre, AstraZeneca International, Alderley Park, Macclesfield, Cheshire. Nearest train station Alderley Edge. The day will run from 11am to 4pm and tea, coffee and lunch will be included in the £15 cost for adults and £5 cost for children under 16.
This is the first of several informative and social days being planned for this year, but how many more will largely depend upon the success of this day.
It will be an informal day when you can meet the faces behind the SSSG and other families. We expect to have a talk by a vitreo-retinal consultant from the Royal Eye Hospital in Manchester, who has a wealth of experience in dealing with Stickler Syndrome patients and retinal detachments.
See the 'Trisha Show' on ITV on Wednesday 2 March 2005 from 9.25 -10.30 am for a feature on Stickler Syndrome.
Walton Wordsmiths joining forces with River vocal harmony group at two prose and music events at Riverhouse (Walton on Thames) in February 2005.
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