The Lowe Syndrome Trust is a UK Charity formed in June 2000 by parents of a Lowe syndrome child.
The charity supports families as well as commissioning and funding medical research into Lowe Syndrome, a genetic disorder that can occur with no family history.
Lowe Syndrome affects boys and has multiple physical and mental symptoms. Sadly the life expectancy for children affected by Lowe Syndrome may be short, however many also grow into adults and defy stereotypes and challenges.
Founder and Chair of the Lowe Syndrome Trust, Lorraine Thomas, gives an insight into what it is like to run a local charity.