PROJECT CONNECT

Rubinstein-Taybi Syndrome (RTS) is a rare genetic condition occurring in around one case per 125,000 births. First identified in the 1950s by Jack Rubinstein and Hooshang Taybi, RTS is both a learning and a physical disability caused by the partial deletion of chromosome 16 during conception. Many RTS sufferers do not have verbal communication.

There is no known treatment that reverses or cures RTS.

Rubinstein-Taybi Support Group UK (RTSUK: registered charity no 1147765) is the UK’s driving force in the battle to discover how RTS can be prevented, reversed and cured, whilst also maximising support for families where this condition exists. The charity has no paid staff and is run almost entirely through donations. These fund essential support for RTS families, including a conference held every 2 years which brings families together in person and enables them to meet and interact with clinicians and researchers.

But more needs to be done.

We need to raise £15,000 to ensure that we can continue funding our research into RTS and continue supporting families throughout 2026-28, including the 2028 family conference.

A team of 9 RTSUK runners will be taking part in the Chiltern 50 Ultra Challenge on Saturday 26 September 2026 to raise this sum.

I I am running because my youngest daughter, Imogen, suffers from RTS. I know first-hand how important it is to find people who understand and support, especially when the road ahead feels uncertain.

The funds we raise for Project Connect will ensure future support - helping RTS families feel less alone and part of a community that truly understands - and future research, so we can create a world where tomorrow’s children are free from RTS.