About the Lowe Syndrome Trust

- Listen to Nick Ferrari LBC Radio Appeal for Lowe Syndrome Trust

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. Lowe Syndrome is a genetic disorder that can occur with no family history, affecting boys and multiple physical and mental handicaps including cataracts in both eyes, muscle weakness (hypotonia or floppy baby syndrome), kidney problems, cysts, brittle bones, arthritis, poor growth, mental impairment with behaviour problems (autistic spectrum disorder) and epilepsy. Sadly the life expectancy for these children is short due to the complications of the disease and the lack of funding to find a cure.

The charity supports families and raises funds to support vital medical research in the hope of better treatment and cure of the disease. The charity has funded research at Great Ormond Street Children’s Hospital, Dundee University, Imperial College London, Manchester University, UCL Opthalmology, University College London, Addenbrooke’s Cambridge,The Institute of California and Purdue University USA (see research section). In 2004 the UK charity held the first international Lowe Medical Symposium at the Royal Society in London. In 2006 the trust sponsored a meeting at the American Cell Biology Conference followed by a second symposium in 2007 at the Royal Society in London. The Trust advertises Requests for Research Proposals (RFP) in the UK with grants of up to £80,000. See Research Grants application form.

The charity organises campaigns and events to raise funds to support research