Information
About the Charity
UK Lowe Syndrome Trust – Registered Charity 1081241
The Lowe Syndrome Trust (LST) was founded in June 2000 as the only UK charity for the rare condition, raising funds for vital medical research into this devastating condition which affects the Brain, Eyes, Kidneys, Bones and Muscles.
The charity founded by the Thomas family whose son Oscar was diagnosed with the condition at the age of 5. The charity has a voluntary Scientific Advisory Board of eminent Professors of Medicine who advise on all aspects of research and review all research proposals.
The charity is committed to improving quality of life for families who have Lowe syndrome, promoting their right to be included on a full and equal basis with others.
The charity also supports UK families with advice on benefit entitlement, local social and NHS services.
We welcome contributions to the web page from families such as news, photos and articles.
The Charity is a listed non-commercial Partner of the National Institute for Health Research (NIHR). These are organisations that award research funds as a result of open competition across England with high quality peer review; fund research that is of clear value to the NHS; and take account of Department of Health and NHS priorities and needs in their research funding strategies. See www.nihr.ac.uk.
The Trust advertises Requests for Research Proposals (RFP) in the UK with grants of up to £50000, typically funding a research project over 3 years or more. See Research Grant Application form.
The charity works in conjunction with other Lowe Syndrome Associations and stakeholders in other countries including the Lowe Syndrome Association USA (LSA), AISLO Italy/Europe, Gurdon Institute Cambridge, sharing resources and information.
Annual Reports & Accounts
What is Lowe Syndrome?
- Lowe Syndrome is a condition from birth that affects the functions of the eyes, kidneys, brain and general development.
- Eye conditions includes cataracts in both eyes that must be removed shortly after birth. Special glasses and contact lenses may be prescribed.
- Fanconi Kidney condition may result in loss of vital substances and may affect bone and muscle development and may lead to kidney stones.
- Brain condition may include mild learning difficulties and challenging behaviour.
- Lowe Syndrome is due to a mutation in the OCRL1 gene
- OCRL1 mutation can also result in Dent-2 that does not exhibit the eye or brain disorders.
The Lowe Syndrome Trust Team
At the Lowe Syndrome Trust Charity, our team, including volunteers, trustees, and patrons, is the driving force behind our mission. Together, we raise awareness, fund research, and provide vital support to individuals and families affected by Lowe Syndrome, working tirelessly to create a brighter future for them.
What We Do
The Lowe Syndrome Trust Charity works diligently to support individuals and families affected by Lowe syndrome. We fundraise, collaborate with experts, offer family guidance, and advocate for government funding and policies to improve the lives of those with Lowe Syndrome.
Founder
Mrs Lorraine Sharon Thomas
It is with great sadness that I announce that my beautiful wife Lorraine Thomas has finally lost the long terrible battle with cancer and passed away on 10th June 2019 at The Princess Grace Hospital. For more information please read our Newsletter. Thank you.