registered charity no 1081241                                                          

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The Lowe Syndrome Trust was founded in June 2000 by parents of a child diagnosed with the Lowe Syndrome disease.  The charity  is small, and voluntary with an aim of raising awareness and funding to support medical research into Lowe Syndrome, an incurable children's disease which affects the brain, eyes, kidneys, bones and muscles.  Since forming, the charity has funded seven UK research Projects (see grants). Click here for latest 2006 Newsletter and Lowe Trust Leaflet . Please contact the Trust on 0208 458 6791 for further information.  

Nick Ferrari LBC Radio Appeal - to find out how you can help the charity, please call/text Lorraine on 07958 444020

Newborn Lowe baby with feeding tube

 

 

 

 

 

Bonnie Lowe Baby from Scotland Lowe Syndrome is a genetic disorder that can occur with no family history,  affecting boys with multiple physical and mental handicaps including cataracts in both eyes, muscle weakness (hypotomia or floppy baby syndrome), kidney problems, cysts, brittle bones, arthritis, poor growth, mental impairment with behaviour problems (autistic spectrum disorder) and epilepsy.

The Lowe Syndrome Trust is a UK Charity formed in June 2000 by parents of a Lowe syndrome child. The charity supports families and initiates and funds medical research into Lowe Syndrome. In 2004 the UK charity held the first international Lowe Medical Symposium at the Royal Society in London Press Release. In 2006 the trust sponsored a meeting at the American Cell Biology Conference attended by over 50 international researchers

The Trust advertises Requests for Research Proposals (RFP) in the UK with grants of up to £50,000. See Research Grants application form and UK Dept of Health RDInfo website. The Trust has contributed to research grants awarded by the LSA and is supporting Lowe kidney research at Great Ormond Street Hospital/Institute of Child Health in London. The Trust has awarded major grants of £50,000 over 2-3 years to Dundee University and University College London to study the Cell abnormality, Imperial College London to support research into a chemical test for the Lowe (OCRL) enzyme, UCL Moorfields Eye Hospital cataract research and Kidney Research to Addenbrookes Cambridge.

The charity is run by unpaid volunteers and is entirely funded bJonathan Ross, Tris Payne at the 2002 Valentine Ball Park Lane y donations and events with the help of trustee Jonathon Ross OBE and patrons Penny Lancaster, Baroness Susan Greenfield CBE, Sir Richard Sykes DSc FRS, Tris Payne, Jono Coleman, Tony Hadley, Tom Conti and other celebrities. The work of the charity has been featured on GMTV Television - download GMTV clip,  and LBC Radio by Nick Ferrari & David Prever - download to Listen. A BBC Radio 4 appeal was also broadcast by Tom Conti.

In 2007 major fundraising events included the Old Cranleighan Ball  and the Jonathan Ross/Tara Palmer Ball.  

Past events have included Tony Hadley Concert, Black and While Ball - Download Jonathan Ross video and Ball Video, a Nutcracker Ball in Park Lane (click for video), and the Madame Tussaudes Halloween Party with Tony Hadley, the FABBA girls, Les Dennis, Danny Baker, Jono Coleman, Vanessa Feltz and Tris Payne.

Other events have included the Spitz RocknRoll Gigs , Mayfair Valentine Balls, "Ladies who Lunch" with Johnathon Ross, Flora  Fun Runs and Theatre Royal Dury Lane "Witches of Eastwick" Lowe Syndrome Benefit.