What's New

WHAT'S NEW

The "Three Peaks Challenge". They did it! On Thursday 11 November 2010 the Surrey firm Broadoak Construction (whose head office is in Fetcham in Surrey) presented Wendy Hughes, founder of the SSSG with a cheque for £4865.00 raised during 24 hours on 11-12 September 2010 when members of the staff took up the gruelling "Three Peaks Challenge" in aid of Stickler Syndrome. The presentation took place at St James in London on the site where a large office complex is being converted into a 254 room Intercontinental Hotel. Emma Sykes, who works for the company, put together a team of Iain (Project Manager) Jeff and Joss (Site Managers), Emma (Health & Safety), Carl (QS) and Lukas (Site Security) to climb Ben Nevis, Scafell Pike and Snowdon all in a period of 24 hours! This was a total of 3400 metres in height. The challenge began on the Saturday with a 5 hour climb up Ben Nevis. Then the team drove down to Scafell Pike for a 4½ hour climb through the night, ending at 3am and finishing off with Snowdon at 8am through to mid-day on the Sunday. When asked if they ever thought of giving up, the team said "Yes, especially when we were cold, wet and very, very tired. But, we were spurred on to complete the challenge knowing that we would be helping people less fortunate and wanted to make a difference". They are supporting the us because Emma's son is registered blind and has been helped immensely by the Stickler Syndrome Support Group.

Emma Sykes Presenting Wendy Hughes with the cheque

The Team at the top of Ben Nevis

All the proceeds will go towards the next SSSG weekend conference to be held at Daventry in June 2011. Watch this space for more details.

PREVIOUSLY ON WHAT'S NEW ....

The "Three Peaks Challenge" in aid of Stickler Syndrome. One of our members, Emma Sykes, works for a company called Broadoak Construction. They have put a team together to endure the "Three Peaks Challenge" on 11 - 12 September 2010 in aid of Stickler Syndrome.

The SSSG has now moved. As of November 2009 the SSSG has moved. The website and attached documents have been updated to reflect the move. The new address and contact details can be found on the Home page.
12 hour marathon ten pin bowl on Saturday 3 October 2009. Trevor Deal of Midlandslink Couriers will be doing a 12 Hour marathon ten pin bowl (non-stop except for comfort breaks) on Saturday 3 October 2009 at the City Pavilion in Collier Row, Romford, Essex in aid of Stickler Syndrome. See the full details here.
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.

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 on Saturday 5 November 2005. It will be held at The Clinical School, Addenbrooke's Hospital, Hills Road, Cambridge. A map, programme and other information will be sent with confirmation of booking. The day will run from 11am to 4pm and tea, coffee and lunch will be provided in the £15 cost for adults and £5 cost for children under 16. The format of the day will be to meet the faces behind the SSSG, chat to other families, get updates of SSSG activities and learn about research at Addenbrooke's from Martin Snead. Also in the background, as before, Kevin Reese will be conducting his study into joint problems within Stickler Syndrome.

A Stickler Syndrome Study Afternoon is to be held at The William Harvey Lecture Theatre, University of Cambridge School of Clinical Medicine, on Friday 27th May 2005. This meeting is intended for clinicians from all areas who manage patients with Stickler Syndrome, but other interested parties are welcome. A few patients will also attend.

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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