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Jonathan Ross Charity Marks Tenth Birthday With a Michael Jackson Legacy and New NHS Backing

Tenth anniversary site and celebrity support video at

March 16, 2010, Press Dispensary. The Lowe Syndrome Trust (LST), the charity dear to the heart of trustee Jonathan Ross and many celebrity patrons including Penny Lancaster Stewart, celebrates its tenth birthday tomorrow as it continues its quest to raise £1m in one year through a series of ten anniversary fundraising events, and as it also celebrates its recognition last week as a Partner Organisation of the National Institute for Health Research (NIHR), giving it access for the first time to NHS infrastructure support.

The Trust was created ten years ago on March 17 by Lorraine Thomas after her son, Oscar, was diagnosed with the rare condition Lowe Syndrome, a currently incurable disease which affects thousands of boys worldwide with a variety of physical and mental disablements and which rarely sees them reach adulthood. A decade later the Trust supports many families affected by the disease and has become the main source of grants to fund research across the UK and USA.

Actively supported by Jonathan Ross, Penny Lancaster Stewart (wife of Rod) and many others – including Tony Hadley of Spandau Ballet, Christopher Biggins, Sir Richard Desmond, Tom Conti, Melanie Sykes, Melanie Blatt, Sir Richard Sykes and Baroness Susan Greenfield – the Trust aims this year to raise a cool £1m through an online auction and ten fundraising events. The auction – which closes on March 31 – is for three highly prestigious lots including an original 1987 copy of Michael Jackson’s ‘Bad’, signed by the King of Pop himself before his untimely death last year.

Jonathan Ross says: “I’m proud to have been involved with The Lowe Syndrome Trust since the beginning. The charity really has done amazing work in the last ten years, supporting families affected by Lowe Syndrome and funding vital research into a cure. We’re now encouraging everyone to get involved in our events for 2010, so we can raise a record amount and make it a truly memorable year for the charity.”

Penny Lancaster Stewart says: “Having a healthy growing child as I do, my heart goes out to the parents with the challenges of young children with life threatening illnesses like Lowe Syndrome. Lorraine is one of them and I met her and her lovely son Oscar five years ago. Oscar’s health resulted in many hospital visits and at the age of five he was diagnosed with Lowe Syndrome. Three months later Lorraine set up the Lowe Trust charity and it is now the main charity in the world funding medical research but it is still a very small one.”

To help the Trust towards its £1m goal, other anniversary fundraisers – highlighted last week on ITN News and by patron Melanie Blatt on Channel 5’s ‘Five Live’  – include a sold-out gala night at Andrew Lloyd Webber’s new musical, ‘Love Never Dies’, the BUPA 10k race across London in May and a cycle race to France’s Champagne region in June, as well as gala balls in June and July, in London and Manchester, and other celebrity nights through the year. Details may be found at

Meanwhile, the announcement that the Trust is accepted as an NIHR Partner Organisation is a major boost not only to its standing with the NHS but to its ability to attract the highest quality research studies, boosting its chances of finding treatments and eventually a cure to Lowe Syndrome.

Dr. William van't Hoff, Head of Clinical Research Facility & Director of Medicines for Children, based at Great Ormond Street Hospital, congratulates the Lowe Syndrome Trust on its achievement and describes the announcement as “a very important piece of news”, explaining that “clinical studies awarded through LST are eligible for support from the NIHR clinical research networks”.

Lorraine Thomas says: “It’s a wonderful tenth birthday present to hear that the Lowe Syndrome Trust is now an NIHR Partner Organisation. It means that we’re properly recognized within the higher echelons of Britain’s health services and gives Lowe Syndrome clinical research studies valuable NHS backing. And with all the activities and events we have going on this year, we’ll be able to celebrate big time with our trustees, patrons, fundraisers and supporters. What a fantastic tenth year!”

Penny adds: “These tough economic times that face us right now make it even harder for those families supporting children like Oscar as their needs are greater. So please help in any way you can, as every little bit helps!”

For further information regarding Lowe Syndrome Trust tenth anniversary events and initiatives please contact Mark Emms on 0845 127 6676 or , or visit

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Notes for editors
Lowe Syndrome Trust was set up in 2000 by Lorraine Thomas after her son, Oscar, was diagnosed with the condition in 1999.

No government support or UK research of the syndrome was available at that time and, for the last ten years, Lorraine has devoted her life to raising money for the charity.

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

Lowe Syndrome Trust Jonathan Ross Penny Lancaster Stewart NHS fundraising funding anniversary

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