Get involved

By becoming a helper

The RTS Support Group is able to provide support and information to its members through the voluntary work of the committee and help and assistance offered by a generous network of helpers.

The charity’s logo was created by a graphic designer called Rayne, the cousin of a committee member who generously offered her expertise and time at no cost.

This website was created with content from committee members and medical professionals, but was made possible due to the technical expertise of Gideon, a digital marketing expert who gave his time and knowledge to guide the project, provide advice and bring the necessary additional technical know how to create a great result.

In both of these cases, our friendly network found out that we were in need of some help and offered their skills and technical capabilities, but just as importantly, they gave us their time.

If you have a little free time, or skills you think could be of use to the charity in any way, we would love to hear from you. Are you interested in social media, good at organising events, or a whizz with IT? Do you have legal expertise which could be useful to other members or have you got experience of fundraising?

We are a friendly and welcoming team. Get in touch with us by emailing

By donating and supporting

The RTS Support Group will be co-funding a PhD student with Aston university to carry out research into mental health in RTS. The PhD student will start in Autumn 2022 and the student will be reaching out to support group member families via our charity to carry out interviews and observation research with individuals with RTS and their families and support workers.

You can read more about the PhD work here.

By attending events

In June 2022, we will hold a family conference. Join us to hear presentations from a range of speakers providing information on a variety of RTS related topics.

Details of the event and how to book are on the Conference page.

A series of online events were held during 2021

Online event November 2021

MAKATON SONGS WITH DIDDY SIGNERS Helen from Diddy Signers is an experienced qualified Makaton tutor. She will join us for a range of signed songs, including some Christmas favourites! Bring your festive decorations and props (bubbles, light up toys) and join in with this fun and interactive session for all ages! She will also explain what Makaton is and its benefits.

Q&A WITH KIERA BYLAND BEM. Kiera has RTS and is a Special Olympics multi gold medal winning cyclist and athlete. Kiera is Chair of the Special Olympics Europe Eurasia Athlete Leadership Council and Vice Chair of the Special Olympics Great Britain Athlete Leadership Team. Kiera delivers initiatives such as “Fit 5” and “Strong Minds” focussing on physical and mental wellbeing of athletes. We will hear how sport has helped Kiera to manage the many challenges brought about by RTS and how she has overcome these to become an inspiration to all. Kiera will also present a fun fitness session for everyone to enjoy and participate in!

ACE MUSIC THERAPY. Amelia Clapham, Director and Founder of Ace Music Therapy, will be giving us an introduction to music therapy, what she loves about it and how music therapy has a positive effect with adults and children who have learning difficulties and additional needs. She will also be demonstrating some of the instruments and techniques she uses in her sessions.

This event took place on 21st November 2021

Online event September 2021

KARATE PRACTISE WITH SENSEI KEVIN! Kevin will tell us about karate and how this has benefited a young student with RTS. He will also share a fun and interactive karate lesson for all the family!

EDUCATION, HEALTH AND CARE PLANS, PERSONAL BUDGETS AND DIRECT PAYMENTS WITH LAXMI PATEL, an experienced special educational needs (SEN) solicitor and recognised SEN expert. Laxmi aims to enable parents and carers to be better informed on the law and Department for Education guidance around education, health and care plans (EHCPs), personal budgets and direct payments, including what to do about issues with the type and amount of educational support provided, the school or college named on the Plan, and how to challenge decisions.

CHALLENGING BEHAVIOUR WITH DR JANE WAITE, a lecturer at Aston University. Jane will help make sense of challenging behaviours in RTS covering: the types of behaviours that occur most often; how often these occur and whether they are likely to persist over a person’s life; what leads to these behaviours; and how to respond. Resources for further reading and self-guided support will also be provided

The event will also include a brief 2021 AGM.

This event took place on 11th September 2021

Online event June 2021

Topics and guest speakers:

SLEEP ADVICE WITH DR. ELIZABETH HALSTEAD – Dr. Halstead is a qualified psychologist who specialises in sleep apnoea. Her session will cover topics such as falling asleep, staying asleep and sleep disorders in RTS.

TRANSITIONING INTO ADULT SERVICES WITH ELIZABETH PERRY, SOLICITOR – Liz is a solicitor specialising in Community Care work and Court of Protection for welfare matters. At the event, Liz will be talking about children transitioning into adult services, the assessment process and the legal framework involved.

THERESA REDMOND, SENIOR SPEECH AND LANGUAGE THERAPIST – Theresa is an NHS and independent senior Speech and Language therapist who has worked with children and adults of all ages with a variety of complex needs with over 20 years of experience. Theresa will be talking about working with children with RTS and the different methods of communication and techniques used at different stages of a child’s development to help them develop their skills. 

This event took place on 12th June 2021

Online event April 2021

Join us for an afternoon of fun, discussion and expertise, we look forward to hosting you.

This will be fun and informative event with:

SINGING HANDS – Suzanne will introduce Makaton signing and take us through some rhymes, action songs and pop songs! All age groups are invited to join this session.

Q&A SESSION WITH AMBA – Amba is 21 years old and was diagnosed with RTS at the age of 15. She is part of a charity called the Council for disabled children

DR MARK HAMILTON – Dr Hamilton is a consultant geneticist and will cover the history of RTS research, how genetic technologies have evolved and how useful research may develop in the future.

This event took place on 24th April 2021

By fundraising

The Support Group is run almost entirely on the donations of sponsors. If you are fundraising, you can deposit money raised via the website via the button below.

The money raised is used to fund or subsidise conferences and outings for RTS Support Group members.