Latest RTS UK News

RTS 2017 Newsletter has arrived

Our RTS 2017 Newsletter has been published.  We hope you enjoy our family stories and find the information included of benefit.

Our next Newsletter will be available in the autumn.  Please send through your stories and any information that you feel might be of benefit, interest to other families.

You can contact me via email at maxinealdred@hotmail.co.uk or by phone 01529 469192 or 17936 365815.

Look forward to receiving lots and lots of information.

Thanks.

Maxine Aldred, Newsletter Editor

 

 

 

3 Peak Challenge in 24 hours

One Team : One Aim

Rich Wyatt and his friends are fundraising for RT Support Group by doing the 3 Peak Challenge starting 06.00 on 20th May and finishing 06.00 21st May.

  • Ben Nevis, Scotland’s biggest mountain at 1344m
  • Scalfell Pike, England’s biggest mountain at 978m
  • Snowdon, the biggest mountain in Wales at 1085m

If you would like to take part in the Challenge or want more information please contact Rich Wyatt on 01480 276123 or via email rts3peaks@gmail.com 

If you would like to donate to raise funds for the RTS Support Group, Rich Wyatt has set up a Justgiving page via https://www.justgiving.com/fundraising/rts-3Peakschallenge

We wish the team all the best and thank you to all taking part.  Also a big thank you to those that are supporting by donating to this Challenge.  

 

Take a look at the RTS International Conference 2016

Conference Newsletter

Interested in taking part in a TV show for Children in Need Special?

Hello,
My name’s Tenniel, I’m a Casting Researcher. I’m writing to you
from Studio Lambert, the BAFTA-winning TV production company behind
Gogglebox, The Great Interior Design Challenge and Doctor in the
House.
We are currently producing a Children in Need Special of the hit BBC
Two show “Big Life Fix”, an exciting and innovative science series
that sees a skilled team of scientists, engineers and designers create
bespoke technology for individuals and groups in need of help to
transform their lives for the better.
In the first series, our team came up with solutions for a range of
issues affecting individuals and communities, including building a
bicycle for a boy born with no hands or feet, making a new medical
helmet for a little girl who just wants to fit in with her friends,
and adapting a camera for a budding photographer who can no longer use
his hands.
If you’re not familiar with the show, here is a short clip which
should hopefully illustrate the premise and tone of the series:
http://www.bbc.co.uk/programmes/p04jylxm
For our Children in Need Special we are again looking for more
children who feel they could benefit from a tailor-made invention.
Whether it’s a condition or disability that prevents a child from
doing something they love or used to love doing, or a daily problem or
challenge which you think could be helped by our brilliant team of
inventors, we’d love to hear from you.
It would be fantastic if you could share some information about our
search on either your website, social media pages or via email to help
us spread the word about this fantastic opportunity.

If anyone is interested in applying, they can call the casting team on
0203 040 6908 or email us at biglifefix@studiolambert.com. All calls
are treated in the strictest of confidence.
Alternatively, a short contact form can be filled out here to express
interest in the show:
http://www.studiolambert.com/take-part-the-big-life-fix.html

Very best wishes,
Tenniel

Seth learns with Snapwords

Bex Wilkinson walked into the kitchen to see what her son Seth was up to as he was very quiet and was absolutely thrilled when she saw that he had written ‘bingo’ and ‘seth’ on the fridge.  Just amazing.  Seth learns letters with songs and a great learning source used at school is Snapwords.  Details can be found at https://child1st.com/collections/snapwords. 

No automatic alt text available.
 

Happy 60th birthday Stephen

 

This month we say a very special Happy Birthday to Stephen who turned 60. He has celebrated many birthdays with ECHO since his early days at the Pembridge Arts project. The cake was made by staff member, Lucy, who gave up her day off to create this chocolate masterpiece so that his friends at Friday Club could share the celebration. Stephen is also a valued member of Clever Betsy who took him out for a pub lunch. ‘I loved my cake’ said Stephen ‘ it was fun to share it with my ECHO friends’

2i Testing chooses RTS Support Group

 

We are very pleased to announce that 2i Software Testing and Consultancy Ltd have chosen us as their charity of the year, we are extremely grateful and wish to thank them for helping us raise essential funds for RTS UK Support Group.   www.2itesting.com   

 

Be part of Research Study: IMAGINE ID.

IMAGINE ID

We are pleased to advise you about a research study led by the University of Cambridge called IMAGINE ID. The study focuses on children diagnosed with a genetic condition which affects his/her learning. www.imagine-id.org/

The inclusion criteria for children to join the study are quite wide; we are looking to collect information from over 5,000 families with children aged 4-18 with intellectual disability due to a genetic cause, including RTS. We hope to learn more about the long-term behaviour and mental health of children and young people from this large group of families. Over 800 families have joined the study so far.

Please take a look at the information booklet via IMAGINE ID Invitation v1_1_160222

For further information, please contact:

Francesca Cooper

Research Assistant/Research Study Coordinator, IMAGINE ID

ImagineID@cimr.cam.ac.uk

01223 254631

 

 

Stories and Snippets for the Newsletter please

I need your help please.  

I am in the process of putting together the RTS Support Group newsletter but I need some input from families please.  Have you:

  • a story you would like to share about your experiences
  • snippets of information that other families might find useful
  • funny stories
  • holiday photos – Christmas
  • requests for information – can other families help?

This is an urgent request.  

Please email anything through to maxinealdred@hotmail.co.uk putting Newsletter into the subject line. 

Thank you all.

Maxine Aldred, Newsletter Editor

 

 

Charlie’s Trophy 2017

Charlie’s Trophy Golf Day 2017 

Charlies Trophy Entry Form

Could you support a special charity golf day to be held at Dainton Park Golf Club, Newton Abbot, Devon. TQ12 5TN on Friday 4th August 2017. Last year was the fourth ‘Charlie’s Trophy’ golf day with 124 golfers supporting the event, it proved to be a great success with £12,710 being raised. This year we will be raising monies for five charities, primarily for the RTS Support Group and Marie Curie, with donations to, Chicks Charity, The Rotary Club of Newton Abbot and Dainton Captains Charities – The Special Baby Care Unit at Torbay Hospital & Renal Unit RDE.

The tournament is named after my grandson Charlie Lawlor, who has a condition called RubinsteinTaybi Syndrome [RTS] Charlie’s parents, my daughter Becky and son-in-law Gary both work for Firewatch and are very keen to raise awareness of RTS. Charlie is one of a twin, his sister Evie is a typical fun loving 6-year-old. Charlie has come on a long way, but cannot write his name and faces many challenges ahead. He is in a main stream school (albeit one to one) but will likely have to go to a specialist school soon. RTS is not the same for all so we do not know what awaits him and his parents.

Charlie is an avid watcher of golf and Rory McIlroy is very much his hero, and enjoys watching Grandad’s team Leicester City! The money we raise goes along way for paying towards the support group’s weekend Christmas event, (costs £12,000) enabling families to get together, share the many problems and make new friends. Now in its 5 th year Charlies Trophy has helped not just the RTS support group’s but many other local charities – to date it has raised £49,194. We continue to fine tune the event with the goal of making it into one of the largest charity golf days in the South West – to that end it now has its own website www.charliestrophy.co.uk the goal with your help is to make this event one of the South West’s premier charity events. I hope you feel able to join us or help in some other way, whether it is entering a team, sponsoring a hole or donating a prize; it all helps and would be appreciated by all the charities we are supporting.

Martin Smith