The Lowe Syndrome TrustThe Lowe Syndrome TrustThe Lowe Syndrome Trust was formed as a Charity in June 2000 by parents with a Lowe Syndrome child. The Trust is registered under Charity number 1081241. The main aim of the trust is to initiate interest, coordinate and fund medical research into Lowe Syndrome.
The charity is run by unpaid volunteers and has no staff, office or administration overheads. Funds are raised through donations, sponsorship and fundraising events and all funds go directly to fund medical research into Lowe Syndrome. See detailed charity accounts. To make tax efficient contributions, the charity is registered with CAF for tax-deductible contributions through a CAF cheque or CAF credit card account. Donations should also be made with a Gift aid declaration (click here), that allows the charity to reclaim tax. The charity has received awards from CAF and ICAEW.
The Trust has a medical and scientific advisory board
and advertises Requests For Proposals (RFP) for medical research
projects into Lowe Syndrome. The charity has initiated and is currently supporting
a number of coordinated medical
research projects
into the different aspects of the disease (brain, eyes, kidney) at Great Ormond Street
Hospital, Imperial College
London, Dundee
University Scotland, Addenbrookes Cambridge and in the USA. In
2008 further research grants have been announced, including a 3-year research
grant of £72,000 to the University
of Manchester UK
The trust has staged events such as the House Of Lords
with Lord Warner, then Under-Secretary of
State for Health and Sir John Pattison, then Director of Research Department of Health.
In
2007 the trust held the second international
medical symposium
on Lowe Syndrome at the Royal Society in
London, and sponsored sub-meetings on Lowe Syndrome at the Amercan
Cell Biology Conference in San Deigo USA. The trust also coordinates
with the Lowe
Syndrome Association (LSA) USA, asle
(Spain), ASL
(France) & AISLO Italy
and were guests at the european AISLO meeting in Italy
in 2007.
The LST scientific and medical advisory board is:
Professor Bruce Caterson, Professor of Research in Orthopaedics and Biochemistry, Cardiff University
Dr Antony Norden, Addenbrookes Hospital, Cambridge
Dr William van’t Hoff, Consultant Nephrologist, GOSH.
Professor Robert Unwin, Professor of Nephrology & Physiology, UCL.
Professor Shamshad Cockcroft,
Department of Physiology, UCL.
Dr Philip Beales, Hon Consultant in Clinical Genetics, ICH.
Dr
Peter Cullen, School of Medical Sciences, University of Bristol
Dr David Taylor Opthalmic Surgeon, GOSH
Mike Harrison Consultant in Pediatric Dentistry,
Guys Hospital London 
The trustees are:
Ms Lorraine Thomas (Chair), Ms Carolyn Mitchell, Mr Jonathon Ross, Ms Catherine McNaught, and Ms Penny Biziou
Patrons include: Baroness Susan Greenfield CBE, Sir Richard Sykes DSc FRS, Tom Conti (BBC Radio 4 appeal April 15th), Tris Payne, Tony Hadley, Jono Coleman , Richard Park , Richard Desmond , Penny Lancaster, Susie Webb, Arsenal Football club Mathieu Flamini and England/ Harlequins Rugby player Andy Gomersall.
For more information contact:
c/o Lowe Syndrome Trust
77 West Heath Road
London NW3 7TH
ENGLAND
Phone: (+44) 208-458-6791
E-mail: lowetrust @ homechoice.co.uk
Solicitors: Stringer Smith & Levett, Finchley Road, London NW3
Accountants and Auditors: Groman and Company, St Johns Wood London NW8