- Area:
- South East England
- Programme:
- Awards for All England
- Release date:
- 21 8 2012
Witnessing your child’s eager first steps is one of life’s most cherished moments. But to see them regress within months is a nightmarish experience for parents of children with the debilitating Rett Syndrome.
Using a Big Lottery Fund (BIG) grant of £7,400, Buckinghamshire-based Rett Syndrome Research Trust UK will be able to support distressed parents of children with the neurological disorder and provide useful information through creating action resource packs. The project is one of 46 sharing over £338,000 in Lottery funding from the Awards For All programme across the South East region this month.
Rett syndrome is a rare neurological disorder affecting seemingly healthy girls in the main, striking around the time of their first birthday and ending their parents’ hopes and dreams for the future. Children lose acquired skills, which can be accompanied by seizures. People with Rett syndrome have profound and multiple physical and learning disabilities and are totally reliant on others for support. Most will not speak and by adulthood only 50 per cent will walk.
Rett Syndrome Research Trust UK was formed in July 2010 through a grassroots effort by families of girls with Rett Syndrome across the UK, campaigning to increase the speed of research developments. The action pack funded through the BIG grant will be a written guide compiled by parents of children with Rett syndrome and will comprise of printed materials and digital files that contain everything families need to get involved and connect with each other to build a more positive future for their daughters.
Rachael Bloom, Executive Director of Rett Syndrome Research Trust, whose 17-year-old daughter Amber suffers from the condition, said: “Rett affects nearly every aspect of these girls’ lives, taking away their ability to walk, talk and use their hands. There is currently no treatment which can often leave parents feeling hopeless about the future.
“We want to change these feelings of helplessness and give parents a lifeline. This project funded by Awards for All will enable these parents to take action to positively impact their child’s future; providing them with the inspiration, motivation and a practical framework through which they can do something to effect change, for their daughter and for girls and women with Rett worldwide. Through the Lifeline Project, parents will gain access to the tools they need to take an active role in this effort, in whatever way they can, whilst becoming part of a national network of like-minded families, from which to draw strength.”
Other projects across the South East supporting people with health conditions and disabilities will also benefit from the funding.
Peapods in Reading, Berkshire, will use their £1,609 funding to provide kayaking or canoeing sessions and barbeques for families of disabled children. This will reduce their sense of isolation and provide accessible activities for older children with disabilities.
DAO (Disability Artists Online) in Brighton will use their £8,366 funding to provide an online service for disabled artists, enabling members to express issues that affect them and communicate with fellow artists through creative writing and poetry.
Mayfield Nurseries in West Sussex, which received £9,856, will deliver a gardening project for people experiencing mild to moderate mental health problems, and develop a new website which will enable online referrals from GP's.
And through their grant of £5,000, Charters secondary school in Ascot will create a garden to commemorate a student who passed away, acting as a venue for bereavement and mental health sessions and engaging a charity to speak to students about mental health for the benefit of the school community.
Today’s funding comes from BIG’s popular small grants scheme, Awards for All, which offers grants of between £300 and £10,000 to social and environmental projects that will benefit local communities and make a difference to the lives of those most in need.
Sacha Rose-Smith, BIG’s Head of the South East region, said: “Parents going through the heartbreaking experience of seeing their child suffer from a debilitating condition will want as much information as possible. Through their Lottery grant, Rett Syndrome Research UK will be able to give more families that vital support and advice when they need it most.
“Anyone who has an idea for a community project should visit the Awards for All website to see if a Big Lottery Fund grant could help to get their idea off the ground.”
A full list of awards announced in the South East today.
- 401KB
Further Information
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Notes to Editors
- The Big Lottery Fund (BIG), the largest distributor of National Lottery good cause funding, is responsible for giving out 40% of the money raised for good causes by the National Lottery.
- BIG is committed to bringing real improvements to communities and the lives of people most in need and has been rolling out grants to health, education, environment and charitable causes across the UK. Since June 2004 BIG has awarded over £4.4bn.
- The Fund was formally established by Parliament on 1 December 2006.
- Since the National Lottery began in 1994, 28p from every pound spent by the public has gone to good causes. As a result, over £28 billion has now been raised and more than 370,000 grants awarded across arts, sport, heritage, charities, health, education and the environment.
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