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Chicago Star Tony Hadley Presents Lowe Syndrome Trust Research Grant to Imperial College, London


March 15, 2007, Press Dispensary. Star of the West End musical ‘Chicago’ and former Spandau Ballet singer, Tony Hadley, today joins Lorraine Thomas, Chair of the Lowe Syndrome Trust, to hand over a cheque for GBP £10,000 to Imperial College, London, for ongoing research into the Lowe Syndrome disorder. Imperial College Rector, Sir Richard Sykes, and Lowe Syndrome researcher, Dr Rudiger Woscholski are to receive the grant on behalf of the college; the grant is a continuation to that awarded by the Lowe Syndrome Trust in 2003.

Dr Michiyo Shima of Imperial College also announces that following the success of the research undertaken by Drs. Woscholski and Ramon Vilar Compte, the college is awarding a grant of GBP £87,000 for the continuation of Lowe Syndrome research.

Lowe Syndrome is a rare, incurable disorder that affects only boys and produces congenital cataracts in the lenses of both eyes, muscle weakness, weak bones, kidney and brain development problems, which explains rather short life expectancy. The disease was first recognised in 1952 by Dr Charles Lowe and is caused by a gene mutation which makes a defective version of an enzyme named OCRL1, needed for normal function of tissues like the lens, brain and kidney, although the reasons for [the mutation?] are still quite unclear.

The Lowe Syndrome Trust (LST) was set up by Lorraine Thomas as a voluntary charity in June 2000 when her son, Oscar (then aged 5), was diagnosed with the disease. The trust supports researchers worldwide in their efforts to gain knowledge and tools to tackle this devastating disease.

In 2003, the LST awarded Drs Woscholski and Vilar at Imperial College London a studentship in order to develop chemical tools for the detection of the substrates of the OCRL1 enzyme. This work has generated chemical compounds that are able to recognise the OCRL1 substrate with some selectivity in conditions that mimic the cellular environment.

Drs Woscholski and Vilar have continued to work on the characterisation of these new compounds in living cells through funds received from the Chemical Biology Centre ( Together with the funding provided today by the LST, they will be able to study the suitability of the receptors towards generating chemical tools for biomedical research and which may even provide the foundations of a future drug development programme to tackle the symptoms of Lowe Syndrome.

Mrs Thomas, chair of the Trust, says: "We were devastated when Oscar was diagnosed with the syndrome at the age of 5. All of the children are partially sighted or blind due to cataracts and some never ever walk. Even Lowe children (boys only) who are doing quite well with the disease sadly deteriorate and most die in their teens. I am so grateful for the research being carried out by Drs Rudiger Woscholski, Ramon Vilar and their teams at Imperial College, aiding us in our aim to raise awareness and funding for research projects that will one day lead to treatments and some increased hope for these boys. We are thrilled that the initial seed funding from the Lowe Syndrome Trust has led to a substantial award to the research team from Imperial College and hope that all research aimed to elucidate Lowe syndrome will attract the attention of other funding bodies”.

The event is taking place at Imperial College London, on March 20, 2007, at 2.30pm. Press wishing to attend can phone Lorraine Thomas on 0208 458 6791 or email .

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Notes for editors
The Lowe Syndrome Trust is a small, voluntary charity: the only one in the UK for the disease. Sponsors include Jonathan Ross, who is a Trustee, together with Tony Hadley, Penny Lancaster, Tom Conti, Richard Desmond, Jono Coleman, Mathieu Flamini and Melanie Blatt who are all Patrons.

The trust is based at 77 West Heath Road, London NW3 7TH and is a registered charity (No 1081241).

For further information, please contact:
Lorraine Thomas, chair
The Lowe Syndrome Trust
Tel: 020 7794 8858 / 07958 444020

Media contacts

Lorraine Thomas, chair
Tel: 020 7794 8858 / 07958 444020