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 info@rtsuk.org.uk.

Focus for 2023 – RTS PhD

The RTS Support Group are co-funding a PhD student with Aston university to carry out research into mental health in RTS. The PhD student, Courtney Greenhill, started in Autumn 2022 supervised by Dr Jane Waite. Courtney will be reaching out to families via our charity to carry out interviews and face to face research with individuals with RTS and their families and support workers.

The RTS Support Group are working with Courtney Greenhill and Dr Jane Waite, to answer important questions about mental health in RTS. Courtney’s PhD research will describe what is unique about the mental health needs of people with RTS and what needs overlap with the general population, identify what factors influence mental health outcomes in RTS, and provide guidance for the support of people with RTS to reduce the likelihood of mental health difficulties developing in adolescence and adulthood.

By participating in research studies

Parents and caregivers of individuals with RTS are invited to participate in the BEOND survey.

The research is funded by the Cerebra Network where researchers will be using the wealth of data collected in the BEOND study to address the concerns of families of people with neurogenetic syndromes.

Participants will be asked to respond to a variety of questions about behaviour, wellbeing, emotion, cognition, and health, and the information provided will also provide more understanding of access to support, service use, and family wellbeing.

Read more about the PhD work here.

This ambitious survey will be repeated several times over the next few years and our hope is that many families will choose to take part at multiple points, so that we can see how responses change over time and get a much better insight into RTS development at different points during an individual’s lifetime.

Families who complete the survey will receive individualised feedback reports to put the information back into your hands, as well as being entered into a prize draw.

Learn more and access the survey via the link below:
https://www.cerebranetwork.com/beond-rts

In June 2022, over 140 RTS family members and experts came together for an RTS Family Conference to hear presentations from a range of speakers, attend interactive workshops and to enjoy some social time making new connections with other families.

In June 2023, we held a family fun day at Drayton Manor Theme park and had lots of fun and time to meet and socialise other RTS families.

Read about the event and view videos from the day on the Conference page.

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

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.