Latest RTS UK News

Passing of our dear friend John Peat

It is with great sadness that we have to announce the passing of our dear friend John Peat. John was past Chairman and dedicated Ambassador of the RTS Support Group.

The funeral will be held at St John’s Church, Yeadon on Thursday, 24th May at 10.15am. The family have asked for donations to The Brain Tumour Charity.

Our thoughts and prayers are with John’s family.

John will be sorely missed and never forgotten.

RIP John. x

Charlie’s Trophy Special Charity Golf Day – 20th July 2018

Charlie’s Trophy Special Charity Golf Day – Friday 20th July 2018

 

Full details on how you can take part or support with raffle and auction prizes are available at http://charliestrophy.co.uk.  Please support if you can and help raise funds for this great event as the money raised goes to support the Family events for RTS Support Group.

RTS Family Get-together – Fully Booked

This event is now fully booked.  Please contact Event co-ordinator on maxinealdred@hotmail.co.uk for further information. 

 

 

RTS Family Get-together, June 9th with overnight stay at Holiday Inn, Birmingham Airport

Letters will be with you have been sent out to our RTS members, but if you have not received your letter or would like to become a member and attend the event, please contact Maxine Aldred urgently via maxinealdred@hotmail.co.uk or text/call 07936 365815. 

 

Your RTS Support Group committee are delighted to welcome you all to our Family Get-together.   This event includes an overnight stay on the Saturday night.  We would advise that you book early as there is limited appointments for 1-2-1 appointments with Specialists.

We are pleased to announce that we will be joined by:

  • Professor Raoul CM Hennekam MD PhD, Professor of Paediatrics
  • Dr Adam Shaw MD FRCP
  • Professor Chris Oliver BSc, MPhil, PhD, CPsychol
  • Dr Jane Waite
  • Gavin Prideaux-Williams, Legal Consultant – Will Writing, Estate Planning & Tax Consultant
  • Elizabeth Perry, Kirklees Citizens Advice and Law Centre – Children’s Care and Support
  • Laxmi Patel, Boves Turner – Education & Healthcare Plans -update of imminent national changes and what that means for you

 

Draft Itinerary:   This will change slightly as we finalise details and speakers but this will give you an idea of what will be included.

9.00am:                Registration and refreshments /  Creche and Playroom open

9.45am:                Welcome and outline of what is happening throughout the day

10.00am               Keynote speakers – Professor Raoul Hennekam MD PhD, Professor of Paediatrics; Dr Adam Shaw MD FRCP; Professor Chris Oliver BSc, MPhil,                                     PhD, CPsychol; Dr Jane Waite

12.30pm               Lunch 

2.00pm                 Speakers as above (timings and full details of presentation content yet to be confirmed)

4.00pm                 Close of day sessions

5.45pm                 Dinner

6.45pm                 Evening fun and games for all (full details to follow)

 

There are three packages available.  

  1. Full event package including B & B:

                Adult:    £40pp (Children over 12 )                                         Child:                        £15pc (Children  4 – 12)

                Child:     no charge (children 3 and under)                            RTS child/adult:      no charge

 

  1. Saturday day & evening dinner package (No B & B)

                Adult:    £30pp (Children over 12)                                           Child:                        £10pc (Children 4 – 12)          

                Child:     no charge (children 3 and under)                            RTS child/adult:      no charge

 

  1. Saturday day package only (9.00am to 4.30pm No evening package or B & B) 

                Adult:    £20pp (Children over 12)                                            Child:                           £5pc (Children 4 – 12)             

                Child:     no charge (children 3 and under)                              RTS child/adult:      no charge

 

 

 

The Second Child by Caroline Bond

The Second Child is the debut fiction from Caroline Bond, a long time aspiring writer who has finally achieved her dream. It is the story of a couple, Sarah and Phil, who discover that their fourteen year daughter is not their child. It is a story that deals with family relationships, love, resilience and parental expectations… what happens when those expectations are fulfilled, and when they are not

One of the children in the book, Lauren, has RTS.

Caroline hopes that the story portrays accurately and sensitively the very special challenges, stresses and the rewards of having a family member who does not fulfill ‘normal’ expectations.

Caroline and her husband Chris have a daughter, Geena, who has RTS, she helped to inform and inspire the book.
The Second Child will available, from March 22nd 218,  in book shops, and on Kindle, in both print and audio formats.

Did you take part in the University of Birmingham Study 10 years ago?

IMPORTANT NOTE:  This is a message for RTS Support Group members who took part in the University of Birmingham research questionnaire 10 years ago.  

If you were an RTS family that took part  in the University of Birmingham study 10 years ago would you be interested in supporting again by participating in the 10-year follow up questionnaire?  We are now continuing this project by carrying out a 10-year follow-up study to find out about changes and progress since we first contacted you. This is the first study to follow up people with RTS over such a long period of time and the results of this study will be important for understanding how people with RTS develop and change as they grow older. The more people that take part in the research, then the more meaningful the results are. A good response at this follow up will provide new and valuable information.

For further information on how you can access the survey please contact Dr Jane Waite, University of Birmingham via j.e.waite@bham.ac.uk

 

IMAGINE ID Research Opportunity: Can you help?

IMAGINE ID is a research study that aims to increase understanding of children and young people with intellectual disability. It is supported by UNIQUE, the rare chromosome disorder charity. The IMAGINE ID team is very keen to learn more about the link between behaviour and rare chromosome conditions. The study, led by University of Cambridge, University College London and Cardiff University, hopes to collect information from over 5,000 families by 2019.

To participate in IMAGINE ID your child should be aged 4 or over. The research group is based in the UK but they are interested in families worldwide. If you live outside the UK, to take part you must have access to your child’s genetics reports. Taking part involves filling out secure online questionnaires about your child’s development and behaviour from the comfort of your own home. If you’re not comfortable with computers or do not have access to the internet, the IMAGINE ID team can go through the questionnaire with you over the telephone or in person. The questionnaires will take approximately 3 hours, but you are able to save your answers as you go and can log in an unlimited number of times to complete it.

After completing this you will receive a personalised summary report which you may find useful when your child is undergoing assessment for services, school or specialist treatment. If you wish, members of the IMAGINE ID team may also visit you at home to conduct an interview with you and puzzles with your child.

If you are interested and want to find out more about the IMAGINE ID study please contact them by telephone on +44 (0)1223 254 631 or email them at imagineID@nhs.net The team is very happy to answer any questions you have.

Challenging Behaviour Presentation

Dr Elizabeth Halstead Ph.D FHEA MBPsS  held a seminar on Challenging Behaviour at the RTS Support Group Family Day in December 2017.  Her presentation is here for you to view.

 

Challenging Behaviour RTS (1)

 

Spring Family Weekend – You will want to Hold that Date!

We are delighted to announce that Professor Raoul Hennekam will be joining us at our Spring Family Weekend.

We are in the process of organising this event and details will be available as soon as possible.  

But we suggest that you put the date in your diary so you don’t miss out.

Saturday, 9th June.  This will be an overnight stay.  

Venue yet to be confirmed but will be in the Solihull area.

Any queries contact Maxine Aldred, Events Co-ordinator via mail@rtsuk.org

2017 Sportsman’s Dinner – Best Yet!

Standing ovation at RTS Sportsman’s Dinner

On October 13th over 130 people attended the 12th RTS Sportsman’s Dinner once again held at Headingley Carnegie Stadium in Leeds, home of the Leeds Rhinos and Yorkshire County Cricket Club.  As most of you will know, the Dinner has been a regular feature of our fundraising event calendar.  Always a successful and enjoyable evening, this year was no exception. The Dinner (as well as the RTS Golf Day) has been organised for the 12 years by our very own John Peat. John is our RTS Ambassador and Fundraiser.

Following a super 3-course dinner, Malcolm Lord, well known after dinner speaker and MC took to the floor to make sure the evening was a true Sportsman’s Dinner!  The comedian kept the laughs coming, the alcohol flowed and everyone supported the auction of sports memorabilia and raffle.  Big thank you to everyone that donated prizes and auction goods.  The evening was a roaring success and was quoted as being “the best ever”. 

During the evening, a true supporter of the RTS Support Group, Rob Burrow, announced that he was auctioning his signed rugby boots on Ebay (those that he wore for his final professional game). After 492 games and 8 grand finals Rob has retired as a player, although not retired from the sports arena. See his interview with the Yorkshire Evening Post below. That very kind gesture has added another £760 to our funds and we are very grateful to Rob, not only for this but for his never-ending support of the RTS Support Group and John and his family. 

However, at the end of the evening John announced that he was standing down from organising the fundraising events due to personal reasons and this would be the final Sportsman’s Dinner.  He was given a very well deserved standing ovation and was overwhelmed by the support.  He asked those in attendance whether they wanted it to continue and in John’s words; ‘I was blown away by the offers of support in the room on announcing my ‘retirement’ and people were determined that this event should and would continue in its current format but with others taking on the organization.’  So the Sportsman’s Dinner continues and we would like to thank those taking over the organisation of the evening.  We are also pleased to say that John will remain in the background helping with the details.

As well as a huge thank you to John for all his work putting on the RTS events over the years, we would also like to thank those that have been firm supporters; local businesses, friends and family.  Over the 12 years, the Sportsman’s Dinner has raised in the region of £50,000 which has helped the RTS Support Group to continually provide support our member families. 

 

 

Diary Date …… Hold the Date ….. Diary Date …. Hold the Date

 

Diary date for you.

The next event will be a special event as Professor Raoul Hennekam will be joining us.

Saturday, 9th and Sunday (until lunchtime) 10th June

Location will be in the Solihull area.  

Details available once confirmed.