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To all our supporters

After 17 years of successful fundraising, enabling a significant contribution to improved diagnosis, treatment and understanding of complex childhood epilepsies, the team at Muir Maxwell Trust has taken the decision to retire. The charity was founded in 2003 by Ann and Jonny Maxwell to help those affected by epilepsy after caring for their son Muir who has Dravet Syndrome, a severe form of the condition that is resistant to treatment.

Run by Ann, who employs two members of staff, one full-time and one part-time, the charity has raised £millions through high profile fundraising events in Edinburgh and London, and in recent years has diverted activity to applying to trusts and foundations to meet the challenges of an increasingly difficult fundraising environment. The last year has been particularly challenging as Ann has had to take time-out from her volunteer fundraising role for brain surgery and proton beam therapy.

Ann, who was awarded an OBE in 2015 for charitable services to the Treatment and Care of Epilepsy in Children, said: “We have concluded it is better to leave the stage on a high and celebrate all of our successes, including the wonderful legacy of the Muir Maxwell Epilepsy Centre (MMEC) at Edinburgh University and also our Muir Maxwell Research Fellow, Dr Simona Balestrini whose pioneering work in the genomics of complex epilepsies at the Epilepsy Society will continue for another year.  

“We are proud to have played a key part in the delivery of a transformational genetic diagnosis at Yorkhill Children’s Hospital for many of the severe childhood epilepsies, and also the arrival of the first NHS approved cannabidiol, Epidiolex, as a new treatment option for more complex epilepsies. We have also delivered more epilepsy alarms to families managing their child’s epilepsy at home than any other UK charity, a legacy that will be continued by the Daisy Garland charity who, in line with our own criteria, will be distributing Muir Maxwell Trust epilepsy alarm vouchers to families for some months to come. 

“It has been an honour and a privilege to work with so many eminent physicians, committed supporters, businesses and indeed celebrities too.  We leave the stage immensely proud of our contribution and especially our partnership with Edinburgh University which will be the continuing legacy of the work of the Muir Maxwell Trust.  These are challenging times for us all but with the strength of the University behind the MMEC we are confident the Centre will continue to make a pioneering contribution, in Muir’s name, to the field of epilepsy for generations to come.”

Ann and Jonny, who is Chairman of the Trust, live in Edinburgh and are parents to Connor (26), Muir (23) and Rory (21). As a five-year-old, Muir was not expected to survive his second decade.  He is now 23 years old and lives full-time at the David Lewis Centre in Cheshire, a world class residential centre caring for 90 adults with complex epilepsy.

Ann added: “Although I am sad that the time has come to wind up the Trust, I am proud of all that we have achieved and the legacy we leave behind in Muir’s name. The work of the Trust has always followed the experience of raising Muir but that journey has changed now from a journey through childhood epilepsy to one focused on living as fulfilled a life as possible in adulthood. Improved treatments and better understanding of complex epilepsies, including Dravet Syndrome, has meant that many children are surviving long into adulthood. My focus has already turned to campaigning to ensure the needs of adults with complex epilepsy are properly recognised and supported allowing them to enjoy a quality of life that is as rich as any other.”

“I know I can speak for the world of epilepsy when I say it is indebted to all those who have supported us over the past 17 years. Together we have made a transformational contribution, and now it is time to pass the baton and move on to our next chapter.”

Professor Sir John Savill, Regius Professor of Medical Science at the University of Edinburgh, said:

“Inspirational support from the Muir Maxwell Trust allowed the University of Edinburgh to establish the Muir Maxwell Epilepsy Centre. The Centre is making remarkable research contributions that will benefit children and families affected by epilepsy for many years to come. I anticipate that the Centre will go from strength to strength, providing one of many positive legacies for the Trust’s remarkable philanthropic work led by Ann and Jonny Maxwell.” 

Sanjay Sisodiya, Professor of Neurology at UCL Institute of Neurology, said:

"I would like to thank the Muir Maxwell Trust, and Ann and Jonny Maxwell, for their huge contribution to epilepsy care and research over many years. The support from the Trust, coupled with the unflagging energy, passion and commitment of Ann and Jonny and their supporters, has enabled progress in basic epilepsy research, translation of basic science into clinical care, and direct support for people with epilepsy and their families and carers. I would like to thank them especially for their support of our translational genomics programme, through which we are implementing discoveries from genetics directly for the benefit of people with epilepsy. It has been a great pleasure to work with Ann and Jonny over many years. Theirs will be a lasting and valued legacy."

Dr Richard Chin, Clinical Director of the Muir Maxwell Epilepsy Centre, Associate Professor in Paediatric Neurosciences at the University of Edinburgh and Honorary Consultant Paediatric Neurologist at the Royal Hospital for Sick Children, Edinburgh said: 

“Families with epilepsy, my colleagues and I have benefitted greatly from the Trust’s support of epilepsy research. Researchers inspired by their support have made significant inroads into understanding the biological processes which underpin epilepsy and through this, have made major strides in development of innovative ways of earlier diagnosis and novel interventions for childhood epilepsy. Our research will continue to strive to address issues clinically relevant for people with epilepsy and their families." 

Professor Sameer M Zuberi, Consultant Paediatric Neurologist and President, European Paediatric Neurology Society, said: 

“In Glasgow we will always be grateful for the grants that allowed us to establish the genetic epilepsy service and fund Dr Andreas Brunklaus in his research on Dravet Syndrome. Andreas is now one of the world leaders in sodium channel epilepsy research. “ 

Lesslie Young, CEO Epilepsy Scotland, said:

“The Trust has played a key role in helping to improve the clinical diagnosis and management of epilepsy in children in Scotland, including the provision of a DNA sequencer which helped to establish Scotland’s ground-breaking paediatric genetic epilepsy service. The Trust has supported many families on an individual basis also, through the providing of home seizure alarms. The commitment and passion displayed by Ann Maxwell and her family over the past 17 years has been unwavering and they are leaving the epilepsy community in Scotland in a significantly better place as a result.  Epilepsy Scotland thanks the Trust for its considerable efforts, and will look to continue aspects of this important work in improving the care of people affected by epilepsy and their families in the years to come.”  

Thank you for your support.

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