Category Archives: Uncategorized

Curing Rett Syndrome: The only way to defeat it is to outsmart it

As a charity that is focused solely on raising funds to support research into treatment for Rett Syndrome and related MECP2 disorders, we talk a lot about finding a cure. But how will this happen? What do we mean by … Continue reading

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Telling our stories

This month we transferred £200,000 (just over $300,000) to the research projects we support in the US – one of the highest quarterly amounts we’ve ever sent. It’s such a good feeling to sign the transfer and send it off, … Continue reading

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Fears and hopes

Everyone who lives with Rett syndrome knows there’s a chance that, one day, you won’t be living with it any more. You hear – too often – about the death of someone’s child, and you try to imagine how it … Continue reading

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Bone Marrow Transplant Stops the Development of Symptoms in Model of Rett Syndrome

A paper published online today in the high-profile journal, Nature, describes the results of using bone marrow transplant to dramatically stop the development of symptoms in pre-symptomatic male and female mouse models of Rett Syndrome.  The work was undertaken in … Continue reading

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Rett Syndrome Research Trust UK is Just Giving’s Best New Charity 2012

Rett Syndrome Research Trust UK has won the Best New Charity Award at the Just Giving Awards held on March 1st, held at Shoreditch Town Hall. This national award celebrates a charity that has been using Just Giving for less … Continue reading

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Rett Syndrome Research Trust UK welcomes new Board Member, Kelly Phillips

We are delighted to announce that Kelly Phillips, Founder of Hope for Harriet has joined the Board of Trustees of Rett Syndrome Research Trust UK.    Since the inception of the charity in July 2010, Kelly has been an avid … Continue reading

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Beyond Excellent

It’s only February and already so many amazing things have come out of working with Beyond Analysis. From their January burn-the-fat aerobics to prolific Valentine’s bake sale, from awesome Rett infographic to awareness raising article in none other than Third … Continue reading

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Up the Garden Path? A short conversation about Rett: research, treatment and the validity of hope

The following extracts are from a Facebook conversation between Nicky Perriman, mum to Robyn and Rachael Bloom, Executive Director of Rett Syndrome Research Trust UK and mum to Amber in response to the following Facebook post:   Rachael Bloom ‘2012 … Continue reading

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Reverse Rett London raises record £273,000 for Rett research

Dear Friends, The evening of December 1st was a very special evening for us. So often as parents of daughters with Rett Syndrome, we face what we face alone.  Looking around 3 Olaf Street that night, the room milling with … Continue reading

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rrl what was said: and now for the really inspiring bit

I’d rather be climbing a mountain than doing this. But after doing that row last week it is nice to be standing up. There’s not many things that are good about this diagnosis but it does really put things into … Continue reading

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