Epilepsy Campaigner

89. Ann Maxwell (Edinburgh)

Ann set up the Muir Maxwell Trust with her husband after facing challenges when their son Muir was diagnosed with epilepsy at four months old.

Ann felt she had no support or anyone to turn to and was determined that others didn’t suffer in the same way.

Today the Muir Maxwell Trust provides children and their families with practical support to improve the quality of life of those children and families affected by epilepsy, and to raise awareness of the condition. Since the Trust was established in 2003 the team have raised £8 million which has funded a number of projects including the UK’s first dedicated genetic service for the diagnosis of complex childhood epilepsies, the distribution of over 2700 potentially lifesaving epilepsy alarms, and the sponsorship of new diet clinics for epileptic children. Most recently, in partnership with Edinburgh University College of Medicine & Veterinary Studies, the Trust has established the Muir Maxwell Epilepsy Centre, a collaborative research centre focused on identifying causes, cures and quality of life issues in epilepsy.

Ann and the team regularly deliver talks and workshops at assemblies and classrooms to secondary schools in Scotland. The team campaigns to raise awareness and understanding of childhood epilepsy – organising balls in London and Edinburgh with different themes to raise funds for charitable causes.

Prime Minister David Cameron said:

“Ann has done an incredible job creating and growing an organisation to give children who suffer from epilepsy and their families the support and care they need. She has raised a phenomenal amount of money for this important cause and helped to pioneer some really innovative projects, including the UK’s first dedicated genetic service for diagnosing complex childhood epilepsies.

“I’m delighted to recognise Ann’s service by making her a Point of Light today.”

Ann said:

“I am honoured to receive this prestigious award from Prime Minister David Cameron on behalf of the Muir Maxwell Trust. This Point of Light Award will help to highlight the serious health and quality of life issues in epilepsy that we aim to address. Our reach has been considerable and we are proud of all the Trust has achieved for children with epilepsy and their families but there is still much to be done, particularly on behalf of young adults like Muir who are profoundly affected by this devastating condition.”

Fiona O’Donnell MP said:

“I am delighted to hear that Ann has been given this award. It is well deserved. I have visited the Muir Maxwell Trust and am aware of the valuable and unique work they do. Ann has used her own family’s experience to make life better for many families coping with caring for someone with epilepsy. My own daughter has epilepsy and I know the strains it puts on you trying to keep your loved one safe, especially in the early days after diagnosis.

“The alarms which the Muir Maxwell Trust provide give families peace of mind and keep the person with epilepsy safe. After a decent night’s sleep, it is easier to face the next day. As well as congratulating Ann I want to say huge thank you to her for all that she does to support families living with epilepsy.”

The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

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