The Lowe Syndrome Trust
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Oscar was born with cataracts in both eyes and a hole in his heart and classed as failure to thrive. We were told he would be blind unless each lens in his eyes were removed asap. It was a traumatic time but we survived the operations and Oscar was wearing contact lenses at the age of 8 weeks or thick pebble glasses. He was monitored closely by Great Ormond Street by teams of doctors measuring and assessing every part of his body and brain for four years.
At the age of 5 we were called back to GOSH to be told a new DNA test had become available for a rare disease. We were told the tests were positive and he had a rare incurable disease called Lowe Syndrome. I asked what it all meant and was told he would probably survive two years.
It was an enormous shock to be told that your son has a rare incurable disease with a short life expectancy. Lowe Syndrome affects the brain, eyes, kidneys, bones and muscles, sadly leading to a short life expectancy. Some children never walk or talk. Symptoms include cataracts, glaucoma, in some cases eye removal, mental impairment, scoliosis of the spine, arthritis, weak bones and muscles, swelling of the joints, kidney wasting, cysts on the brain and kidneys and much more. Children also have autistic behaviour.
I could not find anything about the disease and the hospital knew little. Within three months of the diagnosis I set up the Lowe Syndrome Trust to raise funds to understand more about the disease and funds for scientific research and funds to help and support families. I met a lovely lady in America who spurred me on as she had set up a support group there. Her son died not long after I set up the UK Lowe Syndrome Trust.
We receive no funding everything is done by fundraising campaigns and events.
I hoped that you could support the charity by means of a donation no matter how small. The charity needs support for general office costs and funding vital research to find a cure for Lowe Syndrome, an incurable children's disease affecting the brain, eyes, kidneys, bones and muscles.
As you will see from a brief overview of our research projects, scientists are almost at the stage of drug therapy to elevate the devastating medical problems experienced by children with Lowe Syndrome. But now we need to raise substantial amounts for drug testing and drug trials.
The Lowe Syndrome Trust is extremely small and voluntary but supported by high profile celebrities including Rod and Penny Stewart, Jonathan Ross, Melanie C and Tony Hadley.
The charity has funded highly scientific research at hospitals and universities such as Great Ormond Street, Institute of Child Heath, University College London, UCL Moorfields, Manchester University, Dundee University, The Royal Free Hospital and Imperial College London. We have also funded research in the USA including Yale University, Purdue University and University of California.
The charity also organises UK Lowe Syndrome Trust medical symposium bringing together all the scientists funded by this small charity to present on their work and entice future collaborations. We have also organised scientific Lowe meetings at the American Cell Biology conference. I have an eminent scientific advisory board and also high profile Patron celebrities.
I have met with Russell Hamilton who is Director of Research and Development at the NHS who was highly impressed with the scientific works of the research and the fact we are bridging a gap left open by the NHS by supporting families and professionals. The charity has received many awards for its work and research has been published in worldwide journals. 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 charity has been instrumental in helping families by disseminating its research with findings such as Lowe sufferers can suffer with a blood platelet disorder which can be fatal if undetected. We have also produced the first UK A&E information sheet following the death of a six -year -old who died within 24 hours of being admitted to A&E due to the unfamiliarity of the disease and the kidney aspects.
As you can imagine, it is an uphill struggle competing against the larger well-known causes as the charity has no advertising budget etc.
Facebook: www.facebook.com/lowesyndrometrust
Please also visit:
www.lowetrust.com
At the age of 5 we were called back to GOSH to be told a new DNA test had become available for a rare disease. We were told the tests were positive and he had a rare incurable disease called Lowe Syndrome. I asked what it all meant and was told he would probably survive two years.
It was an enormous shock to be told that your son has a rare incurable disease with a short life expectancy. Lowe Syndrome affects the brain, eyes, kidneys, bones and muscles, sadly leading to a short life expectancy. Some children never walk or talk. Symptoms include cataracts, glaucoma, in some cases eye removal, mental impairment, scoliosis of the spine, arthritis, weak bones and muscles, swelling of the joints, kidney wasting, cysts on the brain and kidneys and much more. Children also have autistic behaviour.
I could not find anything about the disease and the hospital knew little. Within three months of the diagnosis I set up the Lowe Syndrome Trust to raise funds to understand more about the disease and funds for scientific research and funds to help and support families. I met a lovely lady in America who spurred me on as she had set up a support group there. Her son died not long after I set up the UK Lowe Syndrome Trust.
We receive no funding everything is done by fundraising campaigns and events.
I hoped that you could support the charity by means of a donation no matter how small. The charity needs support for general office costs and funding vital research to find a cure for Lowe Syndrome, an incurable children's disease affecting the brain, eyes, kidneys, bones and muscles.
As you will see from a brief overview of our research projects, scientists are almost at the stage of drug therapy to elevate the devastating medical problems experienced by children with Lowe Syndrome. But now we need to raise substantial amounts for drug testing and drug trials.
The Lowe Syndrome Trust is extremely small and voluntary but supported by high profile celebrities including Rod and Penny Stewart, Jonathan Ross, Melanie C and Tony Hadley.
The charity has funded highly scientific research at hospitals and universities such as Great Ormond Street, Institute of Child Heath, University College London, UCL Moorfields, Manchester University, Dundee University, The Royal Free Hospital and Imperial College London. We have also funded research in the USA including Yale University, Purdue University and University of California.
The charity also organises UK Lowe Syndrome Trust medical symposium bringing together all the scientists funded by this small charity to present on their work and entice future collaborations. We have also organised scientific Lowe meetings at the American Cell Biology conference. I have an eminent scientific advisory board and also high profile Patron celebrities.
I have met with Russell Hamilton who is Director of Research and Development at the NHS who was highly impressed with the scientific works of the research and the fact we are bridging a gap left open by the NHS by supporting families and professionals. The charity has received many awards for its work and research has been published in worldwide journals. 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 charity has been instrumental in helping families by disseminating its research with findings such as Lowe sufferers can suffer with a blood platelet disorder which can be fatal if undetected. We have also produced the first UK A&E information sheet following the death of a six -year -old who died within 24 hours of being admitted to A&E due to the unfamiliarity of the disease and the kidney aspects.
As you can imagine, it is an uphill struggle competing against the larger well-known causes as the charity has no advertising budget etc.
Facebook: www.facebook.com/lowesyndrometrust
Please also visit:
www.lowetrust.com
Organizer
Lowe Trust
Organizer
