News
Rett Syndrome Research Trust UK has won the Best New Charity of the Year Award in the Charity Times Award 2011.
The Charity Times Awards, now in its 11th year, seeks to acknowledge and encourage best practice in the management of charities and not-for-profit organisations. The Best New Charity Award is awarded to an organization that has made a demonstrable impact since its foundation, achieved both awareness of itself and its cause and set the foundations of excellent management and accountability in place. The award was open to any charity registered since January 2010. The winners were announced at a black tie gala dinner on the 12th October 2011 at the London Hilton, Park Lane.
On behalf of all of us at Rett Syndrome Research Trust UK, we would like to thank our fundraisers and supporters, without whom, none of our work would be possible. Described by the judges as, ‘a tiny charity, focused on science but founded on love,’ this award is a testament to the love and commitment of families of daughters with Rett Syndrome in the UK and beyond, and to the compassion and support demonstrated by their friends, families and networks.
Rachael Bloom, Executive Director, Founding Trustee and parent of a 16 year old daughter with the condition said:
‘As a research-focused charity, it is sometimes difficult to demonstrate the impact of our work. Even when research developments that are clear next steps are revealed, the true impact will not be exposed until our ultimate goal is realised. But there is a side to our work that does make an impact, an area where the long-term investment in research, the application of time and pressure to an immense tunnel with a clear light at the end, does bring some relief of the more immediate kind. Where once Rett families had no choice but to be resigned to their daughter’s grim prognosis, these days we have something else to hold on to. We have the opportunity now, to take what has happened to her and do something positive with it, something that can effect change. Rett Syndrome Research Trust UK gives families a way to make their stake in their child’s future. Just before the winner was announced on Wednesday, the Charity Times Awards said: “This winner does more than fund research. They deliver hope.” We hope that’s true. And for much, much more.’
Read the full press release here
Pictured above, Andy Stevenson, Rachael Bloom and Rita Ross, Founding Trustees of Rett Syndrome Research Trust UK shortly after receiving the award on October 12th 2011
06/10/2011 Rugby League Legend, Lee Briers, becomes Ambassador for Rett Syndrome Research Trust UK
Lee Briers, professional Rugby League Player has pledged his support to Rett Syndrome Research Trust UK by becoming an Ambassador for the charity. Briers, 33, and a father of two himself, has chosen to get behind our cause because of his longtime friendship with Founding Trustee, Andy Stevenson, fellow dad and father of Beth, age 11, who has Rett.
Since the launch of Rett Syndrome Research Trust UK in July 2010, Lee has already shown his support in a number of ways, most notably by appearing in a Naked Golf Calendar for 2011, with a number of other Warrington players and former players. He has also supported Andy and the charity at large throughout the Bald Mountain Crusade, tweeting to help the Balds win the national JustTextGiving competition, increasing publicity for the charity, awareness of the disorder and an additional £500 for the research projects we support.
With regards to his decision to go public with his support for the charity, Briers said:
' Having played Rugby League all my life, I can't imagine what it must be like to have a body that doesn't work properly and have to watch from the sidelines which is why I want to do all I can to help girls with Rett Syndrome. Andy is not only a great friend but is an absolute inspiration to me and to everybody who knows him. With his drive and determination I’m sure the charity will go from strength to strength and if I can do my little bit, hopefully we can get awareness about Rett Syndrome out there.'
With regards to Briers’ pledge of support, Andy Stevenson said:
'I've been friends with Lee for many years now and he's met Beth and understands the immense difficulties that she and all the girls with Rett Syndrome face each and every day. Rett Syndrome is not a well-known condition and as a charity, we need to increase the profile of both the disease itself and the potential for a cure in order to raise the vital funds we need to deliver treatment in a timeframe which is meaningful for Beth and all the other girls and women living with Rett Syndrome today. Lee has put his hand up to do all he can to help and for that I will never be able to thank him enough.'
22/09/2011 Rett Syndrome Research Trust UK has been shortlisted for the Best New Charity Award in the Charity Times Awards 2011!
The Charity Times Awards seeks to acknowledge and encourage best practice in the management of charities and not-for-profit organisations. The Best New Charity Award will be awarded to an organization that has made a demonstrable impact since its foundation, achieved both awareness of itself and its cause and set the foundations of excellent management and accountability in place. The award is open to any charity registered since 1/1/2010.
The winners will be announced at a black tie gala dinner on the 12th October 2011 at the London Hilton, Park Lane.
Rachael Bloom, Executive Director of RSRT UK and parent of a 15 year old daughter with the condition said: ‘'It is a great honour to be shortlisted for such a prestigious award but the success of Rett Syndrome Research Trust UK can be attributed to one thing only; the relentless determination of parents of children with Rett Syndrome all across the UK who want to do what they can to ensure a better prognosis for their children who struggle with a myriad of difficult symptoms every day of their lives. We know that Rett Syndrome is a potentially reversible disorder. Rett Syndrome Research Trust UK will continue to strive for excellence, working intensively to impact the speed at which treatment can be developed. Our children deserve nothing less.’
Adidas 5K Women's Challenge: September 11th, 2011
Huge congratulations to our 71 strong team for raising over £18,400 in the Women's Challenge. You are all amazing!!
Congratulations to Beth and the Bald Mountain Crusaders, WINNERS of the JustTextGiving Competition in August! Not only did they net an additional £500 for Rett research, they also massively raised the profile of Rett Syndrome and Rett Syndrome Research Trust UK all across the non-profit sector and beyond. Great job!
Congratulations to James Seavers and David Moore of Symphony Online, finalists in the UK Technology4Good Awards 2011, for all their work on behalf of Rett Syndrome Research Trust UK.
Since the inception of RSRT UK last July, there have been many volunteers who have come forward to help us speed treatment for Rett Syndrome, 
but James and David were the very first. Both are fathers of young children, yet neither have any personal connection to Rett Syndrome; they simply responded to a cold call from a parent with idea and a few friends who shared her vision. There were no start up funds and they didn't know if the idea would fly but they took a chance and the rest is history.
In early 2010, James and David began working with us to create a face for the organisation which would become RSRT UK, well before the charity was registered in July. They designed a bespoke template for the website, tailor-made to our requirements and taught us to use the complex content management system which we use to update the website and keep information flowing on a daily basis. We thank Symphony Online for their continued support with web design, hosting and lots of other technical things which we don't really understand but deeply appreciate, all delivered on a pro bono basis.
James and David, on behalf of families of daughters with Rett Syndrome all across the UK, we thank you for your invaluable contribution to this effort to speed treatment for our children and congratulate you on your selection as Finalists in the Technology4Good Awards, 2011.
Hearty congratulations to all of our Virgin London Marathon runners, Hannah Hutton, Natacha Suerez Carlos, Debbie and Charlie Sharpe who all ran magnificently for our children on April 17th 2011, despite the sweltering heat!
Huge thanks and special congratulations to Charlie Sharpe and all of you who supported the Chip in for Charlie Campaign. With your help, Charlie won the extra £1000 for the research projects we support.
Thanks to all our amazing children who joined the effort by drawing amazing pictures in support of Charlie for the Kids Chip in for Charlie Art competition. Special congratulations to winner, Chris Huworth-click on his winning picture to see the other brilliant pictures!
And it's not all about running!
Super congratulations to all involved with the Charity Adventure Yorkshire Dales Cycle Ride over Easter Weekend! This group of thirty cycled over 120 miles of hills to raise funds funds for Rett research. Thank you all and thank you to Charity Adventure for choosing to support RSRT UK with one of their spectacular rides!
Other news:
Check out the latest edition of SEN Magazine for an article about Rett and the potential for treatment. Through In from the Cold, Rachael Bloom explains the chilling reality of Rett syndrome and sees signs of hope in a major scientific breakthrough
SEN Magazine 
provides news, articles, essays and information on all aspects of the Special Needs Sector.
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