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We’re delighted to announce that one of our Partners, Patricia Reekie, has been appointed as a trustee of the fundraising arm of childhood epilepsy charity The Muir Maxwell Trust. Patricia joined the Board earlier this year, and has already made a contribution to strategy and financial reporting, and to the Trust's fundraising initiatives. The most recent of these was an hilarious comedy murder mystery evening, hosted by Michelin star chef Martin Wishart at his Edinburgh restaurant, The Honours. Guests enjoyed a fabulous five course tasting dinner as an intriguing plot unravelled, involving the charity's trustees, an FT journalist, and a number of Edinburgh financiers and lawyers, with an arrest being made just before dessert!
About the Trust
The Muir Maxwell Trust (MMT) is a Scottish registered charity, based in Musselburgh. It was established in June 2003 by Ann and Jonny Maxwell, to support children across the UK with severe and complex epilepsy, along with their families, who frequently struggle to cope. The Maxwells’ own son, Muir, after whom the Trust is named, is profoundly brain damaged by Dravet Syndrome. Muir is 17 years old, but his devastating form of epilepsy began in infancy. The Maxwells struggled to cope throughout that time, and continue to do so even today.
In response to the poor and often slow diagnostic progress they experienced when raising Muir, and the absence of effective treatments for severe and complex epilepsy in children, the Maxwells decided to establish the Trust. In their personal struggle with Muir, they found that there was no one to turn to, and no guidance or support on many matters of health, education and social care. Importantly, they recognised that Muir's syndrome was evolving and would be life-long. Whilst they had no idea where his syndrome would take them, they recognised that there was a desperate need for a charity to support children and families in similar circumstances.
In the course of over a decade, the Trust has launched many projects, finding long-term funding partners, including other charities, the NHS and Government, to continue those projects once properly established. Over £8m has been raised by a very small team and, every year, every available pound is spent on the cause, retaining just enough to fund the Trust's small office for another year.
Despite its small size, the Muir Maxwell Trust is now recognised as a leading paediatric epilepsy charity in the UK, which has contributed significantly to a giant leap forward in terms of progress in childhood epilepsy. The Trust is known the length and breadth of the country, by medical professionals and by affected families. As a result of its work, many children have benefitted from an accurate clinical or genetic diagnosis and more effective treatment, and many children and families sleep better at night thanks to an on-going distribution programme of epilepsy alarms, which alert parents/carers to night-time seizures.
Trust founder Ann Maxwell is now campaigning for better long-term care, particularly residential care, which is at the forefront of the trust's ambitions.
Past & current projects
MMT invests in projects with an immediate outcome, providing practical support and improved quality of life. Past projects include a Genetic Diagnostic service based at Yorkhill Children's Hospital in Glasgow, where MMT's DNA sequencer machines are an essential part of the diagnosis of severe and complex epilepsies.
At the Sick Children's Hospitals in Edinburgh and Glasgow, MMT's state of the art telemetry units, which record seizure activity in the brain, have enabled faster and more accurate diagnoses.
A Muir Maxwell Trust Fellow, having worked with Dravet Syndrome families on real and serious quality of life issues, has enabled a better understanding of the condition, delivering much improved social care.
The Muir Maxwell Epilepsy Centre, based in Edinburgh and headed up by Dr Richard Chin, provides practical support for families coping with cognitive and behavioural problems in children with epilepsy, as well as 'bench to bed' clinical trials, which are transforming lives with pioneering treatments.
Some facts about epilepsy
For further information about the Trust, or to make a donation in support of the Trust's work, please visit the Trust's website at www.muirmaxwelltrust.com.
Muir Maxwell Trust
Office number 0131 273 5256