On Saturday 26th September 2026 a team of relatives, friends, supporters and those with Rubinstein-Taybi Syndrome will be taking on a range of challenging events at the Chiltern Ultra Challenge from 10km to 50km!

Expect blood, sweat and tears as over twenty participants tackle the difficult trails and rolling hills from the basecamp in Henley-on-Thames on our mission to support a hugely important project to help RTS families feel less alone.

PROJECT CONNECT: HELP RTS FAMILIES FEEL LESS ALONE

Rubinstein-Taybi Syndrome (RTS) is an extremely rare genetic condition, occurring in around one case per 125,000 births. RTS is lifelong condition, which affects individuals in different ways and to varying degrees of severity.

The RTS Support Group is a UK registered charity run almost entirely through donations. These donations fund essential support for RTS families, including a conference held every two years, bringing families together in person.

We need to raise £24,800 to ensure the 2028 family conference can take place.

A team of over twenty RTSUK runners will take part in the Chiltern 50 Ultra Challenge on Saturday 26 September 2026 to help on our journey to raise this sum.

For families receiving an RTS diagnosis, the conference can be life changing. Mateo’s family described how, after his diagnosis, “RTS went from this mysterious condition that we felt alone in dealing with to being opened up to a support network with people sharing resources, experiences, support, and encouragement from families dealing with this every day.”

August's family had never met another child with RTS prior to attending the 2026 event. Willow’s family shared a similar experience. They said the conference is “one of the highlights of our RTS journey” because it offers families the chance “to celebrate our amazing children, hear from experts and connect with families who simply understand.”

The impact goes far beyond a single weekend. Families leave with expert advice, friendships and a sense of belonging. As Willow’s family put it, “The RTS Support Group has given us so much more than information. It has given us confidence, friendships, practical advice, and a genuine sense of belonging.”

Please support Project Connect so we can ensure this crucial event continues to connect, inform and support RTS families — helping them feel less alone and part of a community that truly understands.