The RTS Support Group is both a registered charity and company limited by guarantee. We run on a not-for-profit basis by a volunteer management committee of Trustees.
The charity is run and its activities funded almost entirely by fundraising and voluntary donations.
- To provide support to families and carers of people affected by RTS
- To raise awareness of RTS amongst the medical community
- To encourage and support research into the cause and effects of RTS
The RTS Support Group supports families by
- Providing information about RTS which is especially useful to families who have recently received a diagnosis
- Producing and distributing information on research, medical and policy developments
- Arranging social family get-togethers
- Organising larger scale conferences and learning and support events
- Producing and updating this website and delivering regular email communication to registered contacts.
Skills, knowledge and experience
On the management committee, we have many collective years of experience of parenting children and young people with RTS up to and into adulthood.
We maintain close links with Professor Jane Waite and her team at the School of Psychology in the University of Birmingham, are regular attendees and speak at RTS events. We maintain contact with experts in the fields of genetics, SEN legal matters, speech and language, sleep and behavioural issues.
Contact is a UK-wide charity providing support, advice and information for families with disabled children.
Articles of association
You can read our full articles of association here (pdf).
How it all began
The charity started in a small way with Barbara Baron keeping in touch with other families affected by RTS by phone and letter.
In 1986, several families got together, started producing a newsletter and arranging annual get-togethers.
Over the years, membership has grown, links have been made with medical and psychology professionals, and events have become larger and are well attended.
In 2012 we became a company limited by guarantee.
We have a growing membership and are in touch with over 200 families.
If you would like to hear more about our activities and receive regular updates, register with us.
More about Jo
RTS Support Group Chairperson, Marketing Director, and budding beekeeper. Mother to Ellie and Kitty (RTS) born in 2009, diagnosed when she was five.
More about Abbas
RTS Support Group Treasurer and financial analyst
More about Rosie
After studying zoology at university, Rosie trained as a chartered accountant. Rosie lives and works in London and has a cousin who has RTS.
More about Ann
Ann is RTS Support Group Administrator and enjoys pilates, reading, walking holidays and spending time with her young grandson Zachary.
More about Zohra
Mother of Aara Meghjee, an RTS warrior, and Makaton tutor.
More about Helen
Helen works in the education sector and is passionate about mental health and supporting vulnerable young people. She has two children, Luke and Olivia, (RTS) born in 2004.
More about Danielle
Business owner and mother to Sofea (RTS). Danielle loves exercising and Netflix.
More about Julian
Julian is retired, and was previously tax partner in a firm of accountants. He and his wife Anne have two children. Gregory, born in 2002, was diagnosed with RTS type 2 (EP300) at age 14.