Here you'll find all the latest information on Rett Syndrome research, Reverse Rett and other news that impacts our community.

Rare Disease UK: my sister, Rett syndrome, and hope

Sometimes I sit around and think of things my sister has never done.

Amber has never chewed a piece of gum. I hope she has never experienced heartbreak. She has never held a cold beer up to her lips on a hot day and said, ‘ahh.’ She has never sat a...

What ‘awareness’ means to us

By Beth Johnsson

It’s the last day of October. Which means it's not only Halloween but also, as you may have noticed, the end of International Rett Syndrome Awareness Month. As the month draws to a close, we can't help reflecting on...

Running the London Marathon for charity

By Andy Stevenson

It's that time of year when runners all over the UK and beyond find out if they've been successful in the London Marathon ballot. Most don't get a place as it's over subscribed every year. People then turn to their favourite...

Candis: ‘I would give anything to find a cure’

Gayle Fowler with husband, Neil and children, Michael, Ciara and Sofia

My daughter, Ciara, was born in September 2009 following a textbook pregnancy. There were no complications and when we left the hospital everything seemed fantastic – my husband...

What a Weekend for Rett research!

By Beth Johnsson

There’s that saying, isn’t there, about how you wait an hour for a bus and then two come along at once? Well it wouldn’t be fair to say that we are ever sitting around waiting for fundraising events to happen – our supporters are...

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