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.


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