RSRT UK has only one focus; to accelerate treatment for Rett Syndrome. We need funds from the Big Give Christmas Challenge to support our committment to the highly innovative research project part-funded by last year's challenge, at the lab of Jonathan Kipnis Ph.D., at the University of Virginia.
December 2011 - June 2012
Rett Syndrome strikes previously healthy little girls around the age of 18 months and robs them of their speech and mobility, leaving them with debilitating disabilities and medical problems for life. There is no cure. But in 2007, Rett Syndrome was reversed in a lab model of the disorder. Without significant funds, it could take 10-20 years to translate these research developments into real treatment. For many girls living with Rett Syndrome today, this cure will come too late.
Last year's BG Christmas Challenge enabled families of daughters with Rett Syndrome to have a direct impact on their child's future by aggressively fundraising to support a cutting edge research project exploring a new therapeutic approach for Rett Syndrome.
This project, entitled: 'Immune modulation as a new therapeutic approach for Rett Syndrome' now needs continuation funding in order to ensure further progress with this approach which has clear clinical implications.
To deliver £40K over two quarters to the research projects taking place at the Kipnis lab at UVA.
Activities» We will recruit fundraisers to raise a minimum of £500 each to donate through the Christmas Challenge.
We publish information re funding levels every quarter on our website, blog and through social media. Research developments are released as and when they become available.
Rett Syndrome is a very debilitating condition for which there is currently no treatment. But there is hope. This condition has already been demonstrated to be reversible in the lab.
We aim for nothing short of a cure in people.
We hope that our support of this highly-innovative, treatment-focused research will move us closer to that goal.
Success will be demonstrated via research updates as and when they become available.
We ensure the scientific validation of the projects we support through the shared use of the Scientific Advisory Board of the Rett Syndrome Research Trust, which includes many key contributors to the field of Rett research. All research proposals have undergone a rigorous peer-review process before being recommended for funding by RSRT UK.
We will report to donors in the following ways:
1. Updates to News page on RSRT UK website.
2. Blog updates
3. Alerts for all of these updates will be shared through social networking, including Twitter/ facebook page etc.
4. Video log
Budget - Project Cost: £40,000Loading graph....
Amount Heading Description £40,000 Research Direct funding of research project
Current Funding / Pledges
Source Amount Miss Beth Stevenson £3,000 Guaranteed Hope for Harriet £2,500 Guaranteed Cure for Carys £2,500 Guaranteed Clara's Funding Circle £2,000 Guaranteed
RSRT UK is a national organisation, formed to accelerate treatment for Rett Syndrome. Our registered office is based in Buckinghamshire.
For this project we will be utilising technology to involve families and donors from all across the UK.
The ulitimate beneficiaries of our project will be girls and women with Rett Syndrome, their families and communities. Rett Syndrome affects approximately 1:10,000, similar numbers to Huntingdon's Disease and Cystic Fibrosis and yet, it is largely unrecognised. Not only will this project accelerate Rett research, it will also bring much needed awareness to this devastating condition. It will empower families who are otherwise powerless in the face of this disease, to speed treatment themselves.
RSRT UK is the only UK charity exclusively focused on the development of treatments and cures for Rett Syndrome. We recognise that the rate at which research can progress correlates directly with the funds available to pay for it.
Our lean-run organisation and our razor-sharp focus put us in prime position to implement this project.
Read more about the Charity running this project.
Rachael Bloom will oversee the co-ordination of fundraising, pledges and the overall campaign to ensure that donations are made on Challenge Day.
Andy will recruit & motivate fundraisers.
Helen will engage with fundraisers, providing them with information and support as pertains to the Challenge in preparation for the Big Day!