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Johns fundraiser for Rubinstein-Taybi Syndrome Support Group

Amy Farrar is raising money for Rubinstein-Taybi Syndrome Support Group

Team: RTS Support Group - Ultra Challenge

Chiltern 50 Ultra Challenge 2026 · 26 September 2026 · Start fundraising for this event

We are a small national charity supporting families affected by RTS, a rare chromosome disorder, the main features of which are a learning disability and a high incidence of various physical and behavioural problems. We are entirely dependent on donations and all funds directly benefit families.

Story

50K for Marly & RTS 💛🏃‍♀️ (What Have I Done?!)

So… I appear to have made a rather questionable life decision. 😂

At 42 years old, as someone whose idea of running is usually reserved for situations involving an emergency, a closing bar, or possibly the last biscuit… I have somehow VOLUNTEERED to do a 50K run! 😳

Yes. 50 kilometres.

No. I’m not a runner.

And yes… I’m already wondering what on earth possessed me. 😂

But there’s one very special reason I’m going to give it everything I’ve got — my beautiful 8-year-old daughter, Marly. ❤️

Marly has Rubinstein-Taybi Syndrome (RTS), a rare genetic condition, and she is quite simply one of the biggest characters you could ever meet. She makes us laugh, keeps us on our toes and has taught us more about determination, resilience and appreciating the little things than I could ever put into words.

Being an RTS family means the RTS Support Group is a charity incredibly close to our hearts.

They support people with RTS and their families, bring families together, raise awareness within the medical community and help encourage vital research into the causes and effects of RTS. For families like ours, having people who genuinely understand the highs, the worries, the challenges and the downright chaos that can come with RTS is invaluable.

The charity is funded almost entirely through fundraising and voluntary donations, which is why I’ve apparently decided the sensible way to help is to drag my 42-year-old, completely untrained-for-running body through 50 bloody kilometres. 🤦‍♀️😂

Every kilometre will be for Marly, for all the other amazing people with RTS, and for the families walking alongside them.

I fully expect there to be blisters, questionable language, regret and at least one moment where I seriously reconsider every decision I’ve ever made. 😂 But if Marly can face everything life throws at her with that gorgeous smile and determination of hers, then her dad can put one foot in front of the other for 50K. ❤️

So please, if you can, sponsor me — whether it’s £1, £5, £10 or whatever you can spare. Every single donation will help the RTS Support Group continue the fantastic work they do.

And if you can’t donate, sharing this would mean just as much.

Donation summary

Total
£13,235.00
+ £546.25 Gift Aid
Online
£13,235.00
Offline
£0.00

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