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Helping Hospitals

The Glasgow Epilepsy Genetic Service

"Without the purchase of a dedicated gene sequencer by the Muir Maxwell Trust, the Royal Hospital for Sick Children in Glasgow could not have established the United Kingdom’s only genetic diagnostic service for Dravet Syndrome and other sodium ion channel related epilepsies beginning in infancy. The Trust has also funded the maintenance and upgrade of the sequencer, allowing the service to stay at the cutting edge of modern genetic technology. The Board of the Trust had the vision to see the benefits that early genetic diagnosis of a child’s epilepsy might bring. In just over two years, the service has tested about 500 DNA samples and detected mutations in the SCN1A gene in 160 individuals. 50% of these diagnoses have been in children under five and 20% in children under two. An early diagnosis can lead to earlier targeted therapy, better seizure control and better outcomes for affected children. Rachael Birch, the genetic scientist who undertakes the DNA analysis, was awarded the 2007 UK Young Clinical Scientist of the Year for her work in establishing testing. The service was also Highly Commended in the Joint Epilepsy Council Best Health Awards 2007. None of this work, which has benefited hundreds of families with children affected by epilepsy, would have been possible without the support and encouragement of the Muir Maxwell Trust."
Dr Sameer Zuberi
RHSC, Glasgow

The Ketogenic Diet

"The Ketogenic diet is an important treatment option for the large numbers of children with epilepsy who fail to respond to anti-epileptic medication. This specialised diet requires large amounts of dietetic time and, because of this, access to the diet is limited or not even possible in many parts of the UK. In Glasgow, we now have no waiting list for the diet. This is because for two years the Muir Maxwell Trust funded a dedicated Ketogenic diet dietician with the agreement that the NHS would fund the post thereafter. We now have monthly joint medical and dietician clinics, as well as regular family education and awareness evenings."
Dr Sameer Zuberi
RHSC, Glasgow

Great Ormond Street Children's Hospital

"The Muir Maxwell Trust has enabled service development where, previously, possibilities were limited. There is no question they have enhanced services for children with epilepsy in the UK by enabling results of research to be put into practice."
Professor Helen Cross
Great Ormond Street Children’s Hospital (GOH)

RHSC, Edinburgh

"The Muir Maxwell Trust has generously supported children with epilepsy and their families and carers in many different ways. Their financial support has helped many children with epilepsy across the UK and I would like to particularly highlight some of the ways in which children in the south east of Scotland have benefited. For families whose children have nocturnal seizures, the Muir Maxwell Trust has provided epilepsy alarms so that they can be alerted if their child does have generalised tonic-clonic seizure at night. The Muir Maxwell Trust has purchased state of the art equipment to be used by medical professionals, including an ambulatory EEG machine which allows children to go home and have a prolonged EEG recording in their own familiar environment, rather than having to stay in hospital overnight. Some children in Lothian have particularly benefited from the Trust funding a dietician for the Ketogenic diet, a service which at that time could not be provided by the NHS. I would like to thank the Muir Maxwell Trust for the significant contributions they have made to the management of children with epilepsy and their families."
Dr Ailsa McLelland
Paediatric Epileptologist, Edinburgh

Video Telemetry

"Videotelemetry is an essential tool in the management of childhood epilepsy. It allows for a more accurate diagnosis of seizure type and helps toward the identification of epilepsy syndrome. It is important to make a syndromic diagnosis in the childhood epilepsies as there may be specific treatment available as in Severe Myoclonic Epilepsy of Infancy (Dravet Syndrome). More accurate syndromic diagnosis may direct further appropriate investigations.

Videotelemetry has a more specialised application in the management of children who have drug resistant seizures and may benefit from surgery to treat their seizures.

In the RHSC Glasgow we are fortunate to have state of the art equipment which is extremely user friendly thanks to the Muir Maxwell Trust.

One of the best features of the equipment is the video recording which alone can be used for diagnosis. The quality of the video is second to none even when magnified. Magnification of the video allows even the most subtle movements to be detected - something that can be of great importance in identifying the seizure type correctly.

The equipment has been an invaluable addition to this department. For the children and families, especially, they are able to obtain high quality recordings with a minimum waiting time.

We appreciate very much the help that the Muir Maxwell Trust has given".
Dr Mary O'Regan
Paediatric Neurologist, Glasgow

Royal Society of Medicine

"We value the support that the Turst has given us in the preparation of this upcoming event.  Its knowledge in the area of Epilepsy in Scotland will help provide a quality event which will be beneficial to all participants."
Joyce Achampong
Regions Coordinator, Academic Department, Royal Society of Medicine