RTS Family Conference 2026
The 2026 RTS Family Conference took place on Saturday 6 June at the Drayton Manor Park Hotel & Conference Centre, Tamworth, Staffordshire.
Click the image above to download the full slide deck from the conference plus additional content from Dr. Susan Wiley and Dr. Jane Waite’s panel session.
We are so grateful to the fantastic speakers and experts who shared their knowledge, expertise and experiences at the conference; and to the families who came and participated, making the event truly memorable.
About the Conference Sessions:
Education, Health and Care Plans
Laxmi Patel
Laxmi is an experienced special educational needs (SEN) solicitor. Laxmi aims to empower parents and carers by enabling them to be better informed about the law and Department for Education guidance around education, health and care plans (EHCPs), personal budgets and direct payments.
Laxmi’s presentation outlined what RTS parents in the UK are entitled to and what they are able to do when issues are encountered getting access to the type and amount of educational support provided. She outlined the proposed changes in the white paper ‘Every Child Achieving and Thriving’ published by the Government in February 2026 and the implications for special needs families.
Emotional experiences and wellbeing in RTS
Courtney Greenhill
The RTS Support Group co-funded a PhD with Aston University to carry out research into mental health in RTS.
PhD student, Courtney Greenhill, conducted her PhD between Autumn 2022 – 2025, focusing on emotional experiences and wellbeing in RTS. She currently works as an Assistant Psychologist in the NHS and as a Research Associate at Aston University.
Courtney presented the findings from her research, including what is unique about the mental health needs of people with RTS, the factors that influence mental health outcomes in RTS. Her presentation included guidance for the support of people with RTS to reduce the likelihood of mental health difficulties developing in adolescence and adulthood.
A Shared Perspective on RTS: Medical and Psychological Insights
Dr. Susan Wiley and Dr. Jane Waite
Dr. Susan Wiley and Dr. Jane Waite delivered a facilitated discussion, on topics chosen by the conference attendees, including puberty, toileting, constipation and nutrition and sleep, bringing their expert perspectives of both medical and psychological considerations.
Dr. Susan Wiley is a developmental pediatrician at Cincinnati Children’s Hospital Medical Center (CCHMC) in the Division of Developmental and Behavioral Pediatrics and Professor of Pediatrics at the University of Cincinnati. Dr. Wiley trained under Dr. Jack Rubinstein and has provided clinical care to children, adolescents, and young adults with Rubinstein-Taybi Syndrome.Dr. Wiley travelled from Cincinnati to join us at the conference.
Dr Jane Waite is a lecturer in psychology at Aston University and Honorary Research Fellow at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham which focuses on problems experienced by children and adults with intellectual disability, autism spectrum disorders and other genetic syndromes.
Removing barriers
Jane and Jimmy James and their daughter Imogen
Jane and Jimmy James shared their experience of finding voluntary work for their 26-year-old daughter Imogen, pictured above who has RTS. Imogen works part time at Wrest Park, an English Heritage property. They talk about what helped them in Imogen’s search for work and how English Heritage have supported Imogen.
Jane and Jimmy were joined virtually by Imogen’s manager at English Heritage.
Afternoon interactive workshops
Led by Laxmi Patel, Dr. Susan Wiley, Dr. Jane Waite and colleagues from the Cerebra Network and Delphine Koall
Delphine Koall is a Mindset coach and mother to Amelie who has RTS.
Delphine led a reflective workshop designed to help parents and carers pause and look back on their personal journey caring for those with RTS. Using the “House of Change” as a guiding framework, participants explored the different emotional stages encountered when raising a child with a disability with the opportunity to share, listen, and learn from others in the RTS community and consider ways to move forward through these emotions with strength and compassion.
RTS teenager and young adult get together
The rain held off and the teenagers headed outside to have some fun playing Crazy Golf, offering the chance to socialise and make new friends.
AGM & 2026 Fundraiser – The Ultra Challenge
A brief Annual General Meeting was held, where Treasurer Abbas presented the charity’s accounts from 2025.
Rich shared details of the year’s headline fundraising event, the Ultra Challenge, find out more and sign up at this link. Run or walk, Ultra length challenge or family stroll, you decide!
During the evening event, after dinner, families celebrated accomplishments and milestones with a Celebration of Success Award ceremony, then everyone hit the dance floor to use up any leftover energy!
