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Smith-Magenis Syndrome Foundation UK logo

Connecting Families | Raising Awareness | Building Futures

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Smith-Magenis Syndrome Foundation UK

Connecting Families | Raising Awareness | Building Futures

Registered UK Charity 1072573 (CIO 1186647) | Registered Scottish Charity SC044841

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Meet the Staff

Chief Executive Officer

Nigel Over

Nigel Over, Chief Executive Officer

For over 35 years, Nigel Over has been involved in the running of, or contributing towards numerous charities where he holds a personal interest. His dedication has seen him devote a considerable proportion of his time and effort to the benefit of the widest communities actively contributing to national and local charities including, the British Science Association, ENABLE Scotland, REMAP and, of course, the Smith-Magenis Syndrome (SMS) Foundation UK. So much so, that for almost 20 years Nigel has split his time equally between a career in project management and compliance and the third sector in order that he could commit to charitable endeavours; a change in part instigated from becoming the main carer for his son, Matthew, who has Smith-Magenis syndrome.

Nigel’s passion enthuses others to become involved, irrespective of whether he is championing, leading, contributing or supporting these good causes.

In 2008 Nigel’s efforts were recognised with the Volunteer of the Year Award predominantly for activities relating to the public understanding and engagement with science. Through chairing committees he has delivered highly accredited festivals of science, events and conferences. A particular highlight was a national award for an inclusive communication conference delivered by university researchers, care health and education professionals, voluntary organisations, people with learning disabilities, and those with communication challenges.

As a campaigner, Nigel has been influential in changes to legislation and practice with a particular focus on education and care. A number of these campaigns, primarily with ENABLE have gone forward to receive many charity awards recognising the significant contributions being made towards equality in society and improving the quality of life for those with disabilities.


Fundraising Manager

Helen Hargrave

Helen Hargrave - Fundraising Manager

Having worked in the charity sector since 2010, Helen has spent the past five years in senior management fundraising positions for a variety of charitable causes, incorporating small local charities including Richard House Children’s Hospice through to national organisations including Maggie’s, Shelter and Diabetes UK. Within the third sector, Helen has worked across a number of causes all with vulnerable people at their core, and helping vulnerable people is of massive importance to her. Helen specialises in fundraising and service delivery and is experienced in establishing fundraising programmes across a number of income streams, with a particular focus on corporate, trusts and major donor fundraising. Her experience as a senior fundraiser has enabled her to hone her skills in building a compelling story and understanding donor motivations.

Helen is a parent to Jacob, who is 1.  She joins the Smith-Magenis Syndrome Foundation from her role as Director of Victim Services at Brake, the road safety charity, where she led the victim services team in the funding and delivery of the organisation’s national freephone telephone helpline, the police liaison programme, and their project Sudden, which supports bereavement professionals and anyone bereaved by a sudden death.


Leeann Stevenson

Information and Communications Manager

Leeann Stevenson, Information and Communications Manager

For the past eight years, Leeann has been at the heart of our communications, information and branding as a Trustee of the charity. The transformation of the charity in this time has been exceptional. Leeann’s dedication has resulted in the Foundation becoming the go-to organisation for information on Smith-Magenis syndrome not only for the United Kingdom but across the world.

Leeann is the mother to three children, Lily who is 13 (SMS), William who is eight, and Teddy who is five. Leeann is coming from being a director of a small Web Design agency in Marlborough, Wiltshire that specialises in charity websites and marketing.

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Call: 0300 101 0034

Please note: This is an answerphone service that will alert us as soon as a message is left. A trustee will call you back as soon as possible – we aim to respond to messages within 24 hours.
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