RTS Family conference – June 2022

Thanks to everyone who made the 2022 RTS Family Conference such a great success

The RTS Support Group conferences are family events with something to interest everyone. The event in June this year was attended by over 140 people who heard from expert speakers and spent time taking part in workshops and enjoying some time making new contacts and catching up with each other.

At the conference, we launched the new RTS Family Network. Families who have joined the network have received contact details for others in the network, with the aim of enabling families to arrange local get togethers with families in their area. Visit the Connecting Families page to find out more. Please note that the Network is for UK based families only.

Dr. Jane Waite, Clinical Psychologist and Senior Lecturer in Psychology at Aston University
Effie from the Aston University team

Presentations and Workshops

Dr. Jane Waite’s presentation was recorded on video camera during the conference and will be uploaded to the website when we have the final file.

Effie from Jane’s team at Aston University delivers a workshop about managing challenging behaviour.

Dr. Wendy Jones’ presentation was also recorded and will be available on the website in due course. It would be beneficial to share with any contact, or medical professional who would benefit from an overview of:

  • The genetics of RTS
  • Physiological issues that can arise from RTS, which a newly diagnosed family may wish to use as a helpful guide to know what to look out for, and which medical specialists they may wish to arrange to see to evaluate their child
  • Recently published research conducted with adults with RTS
Dr. Wendy Jones, Consultant in Clinical Genetics and Genomic Medicine at Great Ormond Street Hospital and an Honorary Associate Professor at University College London at the Institute of Child Health

Caroline Bond (in green), is Chairperson of Leeds based charity Weekenders for individuals with disabilities and a published author. Caroline gave a warm and from the heart personal account of her own list of ‘It’s OK’s’ from her experiences as parent to three now grown up children, including Geena who has RTS.

It was great to see families spending time together and making new connections during breaks and mealtimes.

Afternoon workshops

Laxmi Patel ran discussions with parents talking about how best to access the type and amount of educational support required for their children and how to handle issues when they are encountered. 
Liz Perry, a solicitor specialising in community care work and the Court of Protection talked about the process of transitioning children to adult services, including how the assessment process works and the legal framework involved. 

Laxmi Patel, special educational needs (SEN) solicitor

Teens and Up session, run by two young RTS Ambassadors

RTS Ambassadors Amba Ragbir and Kiera Byland

The group session for teenagers and young adults with RTS give the chance to meet and share experiences. Young ambassador Kiera Byland introduced some practical techniques to improve calmness and reduce anxiety which were fun but also a good reminder that there are simple tricks we can use when we are feeling stressed. Kiera also generously showed us her extensive collection of medals, including her amazing gold medals from the Special Olympics World Games and a beautiful British Empire Medal which she was awarded for her services to sport. 

Young ambassador Amba Ragbir ran an interactive group discussion putting questions to the group, with the aim of helping everyone to find out more about each other.

Amba introduced an element of fun into this with a sensory ball which could be rolled, thrown or passed to the next person to answer the question. 

A huge thank you to Kiera and Amba for their hard work in preparing this part of the event and for running the group so well on the day. We will continue to liaise with our teenage and young adult community on future opportunities to keep in touch and hopefully have some fun in the not too distant future! We would love to hear from anyone teenage and up with RTS who is interested to join future activities.

Having some fun

While everyone enjoyed a table service dinner, a DJ did a super job of playing popular Disney tracks and songs with actions to entertain everyone and Mad Dom the magician conjured up lots of great tricks and balloon animals and swords!

A big ‘thank you’ from the Support Group Committee

The charity committee team send their thanks to our wonderful speakers, and all of the families who came to the conference, it was great to see you all.