First on the dance floor

Well another conference is over and I am delighted to say it went extremely well.  We had a lot of new people this year, and everyone, even the ‘old timers’ said it was the best ever.  Even though I organised I must agree!

Youngster bonding

Friday we all meet for a welcome drink and by the end of the evening my throat was very sore.  ‘Never,’ exclaimed my husband, ‘you can never stop talking, so it wouldn’t affect you!’  What was more pleasing was to see several of our 16-17 year-olds participating and enjoying themselves.

Chatting away

After our meal in the evening we were entertained by 16 year-old, Marcia Shaw (Simply Marcia), and do look out for her.  She has a brilliant future ahead of her despite people saying that because she has Stickler Syndrome she should settle for something less demanding.

children having fun

Friday has a packed with information from our excellent Stickler Team and medical professions.  The children were taken to the crèche run by an excellent team from the Mobile Crèche Company who specialises in children with disabilities.  Mr Martin Snead started the day with a talk about Retinal detachments then and now, and it made us all realise how lucky we are to have out Stickler Diagnostic Clinic at Cambridge which he followed up with a report on the latest joint findings in children with Stickler Syndrome, because no one was available from the rheumatology department.  This was followed by Julie Clarke an othropist who fits glasses on our little ones.  This was a fascinating talk and gave us an insight into such a vital job and how she uses all sorts of methods to test their eyes.

Conrad letting his hair down!

We then had time for networking before lunch.  In the afternoon Mr Philip Alexander, a vitreoretinal surgeon took a new departure and talked about hearing lost in type two Stickler Syndrome, and took questions from the floor that Mr Snead could not answer in the morning, because he had to rush off to two emergencies!   The stamina of this man is super hero level!

Dad and daughter dancing

After another chance to network and enjoy a cup of tea, one of our members Amanda-Ross Wallis entertained us, with the help of young Harvey on how positive thinking turned her life around, trained as a hypnotherapist helping people to turn their lives around too.

Dancing the night away

The hard part of the weekend was over and everyone either continued to network or rested before our dinner and dance in the evening.  It was great to see so many up on the floor dancing despite their problems and if someone did happen to  bump into another they shared a joke, or said ‘Ops’, must look where I am going,’ despite the fact that they were totally blind.  Dancing went on to 12, but some stayed up even later networking or helping those newly diagnosed with ideas on how to cope.

Harvey, Amanda, Wendy

Sunday was a far more relaxed day. With several going swimming in the hotel’s pool.

Marcia

The last session of the weekend was an excellent talk by the Guide Dogs for the Blind who are more than just about Guide Dogs.  They have a section on early intervention and education, which most people found most interesting and Wendy Sainsbury and Hazel Russell were inundated with question, which several of our families will use their organisation, especially help with education.

Martin Snead, Julie Clarke, Wendy

We then had a quick AGM and have gained names to work on the committee as I wish to take a sideward step in 2019.  I would have been running the group then for 30 years and I think it is high time for me to pass on my knowledge to others.

Mr Philip Alexander and Wendy

We all had another chance to network before a delicious Sunday Roast lunch, and I must mention the Village Hotel Resort in Coventry who were absolutely wonderful; nothing was too much trouble for them, which made it easier for us as organisers, and made such a difference to our members who often come nervous having not seen another ‘Stickler’ person outside their own family, but go away having enjoyed the experience, and with new ‘Stickler Friends to contact.

The Gathering of the ‘Stickler’ clan

I came home exhausted but happy to know that I have made the lives of some people more rewarding.

Two families networking

Wendy Introducing Marcia

What a good time we had

About Wendy Hughes

Wendy turned to writing, in 1989, when ill-health and poor vision forced her into early medical retirement. Since then she has published 26 nonfiction books, and over 2000 articles. Her work has appeared in magazines as diverse as The Lady, Funeral Service Journal, On the Road, 3rd Stone, Celtic Connections, Best of British, and Guiding magazine. She has a column in an America/Welsh newspaper for ex-pats on old traditions and customs in Wales. Her books include many on her native Wales, Anglesey Past and Present, The Story of Brecknock, Brecon, a pictorial History of the Town, Carmarthen, a History and Celebration and Tales of Old Glamorgan, and a book on Walton on Thames in the Images of England series, a company history and two books on the charity Hope Romania. She has also co-authored two story/activity books for children. Her latest books are: Haunted Worthing published in October 2010, a new colour edition of The Story of Pembrokeshire published in March 2011, and Shipwrecks of Sussex in June 2011 and Not a Guide to Worthing in 2014. She is working on a book entitled A-Z of Curious Sussex which will be published in 2016 Wendy also works with clients to bring their work up to publishable standard and is currently working on an autobiography with a lady that was married to a very famous 1940’s travel writer. Wendy has spent many years campaigning and writing on behalf of people affected by Stickler Syndrome, a progressive genetic connective tissue disorder from which she herself suffers. She founded the Stickler Syndrome Support Group and raises awareness of the condition amongst the medical profession, and produces the group’s literature, and has written the only book on the condition, Stickler The Elusive Syndrome, and has also contributed to a DVD on the condition, Stickler syndrome: Learning the Facts. She has also writing three novels, Sanctimonious Sin, a three generation saga set in Wales at the turn of the century, Power That Heal set in the Neolithic period entitled Powers that Heal, and a semi biographical book entitled New Beginnings which deals with two generations coping with blindness and a genetic condition. She has also had a handful of short stories published, and in her spare time is working on several at the moment. She also gives talks on a variety of subjects including Writing and Placing Articles, Writing Local History, Writing as Therapy, Writing your first novel, etc, and runs workshops on the craft of writing – both fiction and non-fiction. She is a member of the Society of Women Writers and Journalists, and a member of the Society of Authors.