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| HOMEPAGEABOUT USNEWS |
17 May 2004
Lottery money helps UK Researchers discover gene that causes rare disorder
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A Community Fund lottery grant of over £145,000 has helped a team of research doctors from Newcastle University to locate the gene that causes the rare Cornelia de Lange Syndrome (CdLS).
CdLS affects just one in 40,000 live births but can be devastating with affected youngsters having growth problems, missing or deformed limbs, gastro-intestinal disorders, seizures, cardiac problems, neurological, learning and behavioural difficulties and oro-dental issues. It is believed that almost 1,000 people in the UK are affected by the condition.
Doctors in the USA and Europe knew that there was likely to be a rogue gene that caused the syndrome but despite more than 15 years of searching it hadn’t been found. But thanks to a grant to the CdLS Foundation in 2002 from the Community Fund’s Research grants programme, there has now been a breakthrough and the team led by Professor Tom Strachan at Newcastle University’s Institute for Human Genetics reported in Nature Genetics last night that the gene has been located on Chromosome five. The findings have been confirmed by a simultaneous study carried out in the United States at the Children’s Hospital of Philadelphia. Dr Birgit Brandt, Community Fund’s Research Grants Manager, said, "The Community Fund would like to congratulate the Foundation and researchers on the early breakthrough in identifying the gene that causes Cornelia de Lange Syndrome. Our Research Grants programme aims to bring voluntary organisations and their beneficiaries into the forefront of setting research agendas and we want to direct funds towards medical research that might not attract support from elsewhere. We are delighted that in this way our money has enabled the Cornelia de Lange Foundation to succeed in its research." Chairman of the CdLS Foundation Alan Peaford said, “The award came at just the right time and proved to be the lifeline the project needed. It allowed us to take a new approach and it has paid off. The difference for families who have been isolated and scared to have other children is indescribable. This grant has made a significant difference to people’s lives.” Professor Strachan said that he hoped that the breakthrough would lead to more funding support. "We are leading the field internationally. But it is not attracting the funding because the condition is thought to be so rare. I feel that as a society and nation we are letting these children and their parents down," he said. “We are so grateful that the Community Fund was able to give us the lifeline we needed.” Notes for Editors:
1. Community Fund gives out money raised by the National Lottery to charities, voluntary and community groups. Out of every £1 spent on the National Lottery the Community Fund gets 4.7 pence. Since 1995 Community Fund has awarded over 60,000 grants worth more than £2.7 billion to UK charities and voluntary groups. 2. The legal name of the Community Fund remains the National Lottery Charities Board. The National Lottery Charities Board was set up in 1994 and changed its operation name to Community Fund – Lottery money making a difference in April 2001. 3. A new organisation is currently being formed from the New Opportunities Fund and the Community Fund and will soon be distributing a major share of the good causes money raised through the National Lottery. This is an exciting opportunity for us to build on what both Funds have achieved so far and create an even more responsive and accessible organisation. The new distributor, The Big Lottery Fund, will be launched in June 2004. Current programmes, beneficiaries or applications will not be affected. 4. The New Opportunities Fund distributes National Lottery money to health, education and environment projects across the UK. We intend to support sustainable projects that will improve the quality of life of people throughout the UK, address the needs of those who are most disadvantaged in society, encourage community participation and complement relevant local and national strategies and programmes. (Funding for programmes is divided between England, Scotland, Northern Ireland and Wales on the basis of population weighted to reflect levels of deprivation). 5. CdLS was named after the famous Dutch paediatrician and geneticist who first identified the condition. Information about CdLS, the diagnostics and stories about people affected can be found on the The CdLS Foundation’s website (see link opposite). | For media enquiries please contact the Community Fund press office on 020 7211 3709 or Alan Peaford from the CdLS Foundation on 020 7536 8925 or 07703 561764.
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