Latest RTS UK News

Sad news of Anita Gardner’s passing

With the sad news of Anita Gardner’s passing, here are the funeral details and instructions from the family for anyone who wishes to attend:

The funeral is on 19th of June at 4:10pm at Stourbridge crematorium.

We ask that no one wears black. Only wear nice bright colours and if you have anything lilac – even a pocket square or broach – that would be amazing. Mom didn’t want anyone in dark colours or black.

We are not asking for flowers but undertakers will be taking donations at the crematorium, which will be donated to charities of my Moms choice. If you wish to bring flowers also we ask that a single flower which you can add a message to.

The wake will be at Katie Fitzgerald’s on Enville Street after the ceremony.

RIP Anita. You will be greatly missed by the committee and families 

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

Maxine Aldred read the following eulogy at the funeral service:

It is my honour to be able to say a few words on behalf of the Rubinstein-Taybi Syndrome Support Group of which John was Chair and an integral committee member for so many years. We will all have our own lasting memories of John but I would like to share one or two significant memories of ours with you.

We were so excited as a group to be advised we were shortlisted for a grant for our trip taking 2 coachloads of RTS families to the 2011 International Conference in Holland. On a very cold and snowy December day, John, Gill and I made our way down to London to give our presentation to a panel of high ranking, influential people. Our first experience was to lose John at St Pancras where we had arranged to all meet up. After some time of searching the station and calling John, Gill and I gave up and made our way to the venue. Needless to say when we arrived who should be sitting there enjoying a cup of tea, but John. We forgave him at the end of our presentation when we were congratulated on our passion for our cause. We were subsequently awarded our grant.

John was equally at home around fame and fortune. As our Chairman he represented us at the Newman’s Own Foundation Reception held at the National Theatre, South Bank in May 2010. In true John style, having been presented with the cheque he schmoozed the room including Hugh Grant who was there representing another charity. Once again his passion for RTS knew no bounds.

John’s excitement overflowed when he heard RTS mentioned live on Sky TV by Rob Burrow. Rob had always promised him that if he was ever Man of the Match, he would donate his reward to the RTS Group. As non-sporting women on the committee, the first we knew of this was when our phones starting pinging with the text. John always said that this was one of the most unforgettable highlights of his charity work.

We have so many fond memories of John from over the years and last but not least was John’s ongoing campaign to recruit additional men onto the committee. For many years John had to endure being the only male on the committee of 12.

John was one of life’s good people and his straight talking Yorkshire personality and unwavering support were a huge asset to our committee. His fundraising activities; the RTS Golf Day and the RTS Sportsman’s Dinner over the years made in the region of £100,000. A significant achievement and one that John was, quite rightly, very proud of.

The gratitude of RTS members has become very apparent over the last week with floods of messages being received including messages from Professor Raoul Hennekam, Dr Adam Shaw and Professor Chris Oliver. John was known to so many families within the RTS community.

John, it has been an honour to have worked alongside you for so many years and on behalf of the RTS Group, we want to thank you for always being there. We will miss you, but never forget you. Your legacy lives on.

Our thoughts and prayers are with John’s family.

You 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.

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.