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Seed Capital

In the course of the last 10 years the Muir Maxwell Trust has launched and completed many projects. Our objective has always been to identify areas of need and to evidence that need by successfully launching a project/service and then where possible, hand on the ongoing responsibility for that project/service to a suitable long term funding partner.

There is no better example of this than our Genetic Diagnostic Service launched in partnership with the Royal Hospital for Sick Children in Glasgow and lead by Dr Sameer Zuberi. The Trust funded the sequencer machine and the software and sponsored a Muir Maxwell Trust Fellow, Andreas Brunklaus, who supported the project with relevant research which has now been widely published across the world.

The break through gene for this service was the SCN1a gene which is the cause of Dravet Syndrome, a severe and profoundly damaging form of epilepsy suffered by our Founder's, 15 year old son, Muir. The initial focus of the service was Dravet Syndrome but rapid progress has enabled further gene mutations causing epilepsy to be embraced.

The service, dedicated to children with epilepsy in the UK, gave confirmation of clinical diagnosis of Dravet Syndrome within 40 days of presentation and very quickly hundreds of children in the UK were identified with the condition and a number of their families got together and supported each other. Coupled with our Fellow's research, Dravet Syndrome was soon recognised as a condition with significant lifestyle consequences for its victims and their families. Our understanding of Dravet Syndrome moved on dramatically from a largely misdiagnosed and hugely misunderstood condition to one that the medical experts now recognise with relative ease and appropriate medication is prescribed to ensure a better prognosis than in times past. There is still a long way to go but with the support of MMT's loyal donors much has been achieved.

This award winning, world class service caught the attention of the Scottish Government and further to a meeting with Nicola Sturgeon and MMT's Founder Ann Maxwell, it was announced in the Scottish Parliament in May 2012 that the future funding requirements in terms of sequencing equipment would be met by the Scottish Government.

http://www.scottish.parliament.uk/S4_BusinessTeam/pm-v2n4-S4.pdf

Additionally, and by default a Dravet Syndrome charity was also established to support the families of Dravet Syndrome children, identified by the service in Glasgow. Together the Dravet Syndrome families are now fundraising to support further research that will benefit their children and the children of the future born with this syndrome. Through Dravet Syndrome UK they have raised £100,000, £30,000 of which has been awarded to help Professor Helen Cross and her medical team at Great Ormond Street Children's Hospital in London to review the DNA of those children diagnosed with Dravet Syndrome but who don't have the typical genetic mutation.  A further award was made to fund a research administrator to work with Dr Sameer Zuberi at the Royal Hospital for Sick Children in Glasgow. 

http://www.eastbourneherald.co.uk/news/local-news/mother-of-aimee-baker-receives-research-award-1-3581924

From the little acorn a mighty oak tree grows!

Thank you to all our supporters.

 

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