Wednesday, September 23, 2009
WENDY HUGHES AND THE STICKLER SUPPORT GROUP
What do you know about Stickler Syndrome? Very little, I bet, but supporters of the Stickler Syndrome Support Group could tell you, as they will be raising awareness of this little known condition. This is a very serious, life-limiting and sight threatening condition. More information about the condition can be found on www.stickler.org.uk.
Trevor Deal of Midlandslink Couriers (www.midlandslinkcouriers.com) will be doing a 12-Hour marathon ten pin bowl (non stop except for comfort breaks) on the SATURDAY, 3rd of October 2009 at the City Pavilion in Collier Row, Romford, Essex in aid of Stickler Syndrome. A group has been set up on facebook to assist with raising awareness and funds. So far 168 members have joined the group and a lot have said that they will support this event.
Wendy Hughes is one of my colleagues in the Society of Women Writers & Journalists and she also happens to suffer from this condition. Wendy is the founder (and Hon President) of the Stickler Syndrome Support Group and has written books and regularly lectures on the subject around the world.
A friend of Trevor’s whose daughter suffers from the disease, has also written a piece giving a personal insight into the the life of caring for someone with Stickler's. It's a moving and useful piece of information. The Romford bowling alley is giving the Society free use of their facilities and also assisting with collection of funds.
Let's hope they get good coverage in local newspapers and radio stations. The Stickler Syndrome Support Group would like to say special thanks to Tina Stevens for her personal insight piece, Robert Illingsworth of TNK for the t-shirt print and flyers, Jacqueline Walsh for setting up the group on facebook, Mark Wilson for travelling around and offering to help on the day, Rebecca Stevens for giving us the inspiration to do the event, Maria Conrad for assisting on the day with collections and the managers of City Pavillion for use of their facillities on the day.
The team hope to see as many people as possible on the day to help make this event a success and let parents and sufferers of this condition know they are not alone and there's a lot of support out there.