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Smith-Magenis Syndrome Foundation UK logo

Smith-Magenis Syndrome Foundation UK

Connecting Families, Raising Awareness, Building Futures

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  • What is SMS?
    • Overview of SMS?
    • New Diagnosis
    • SMS Behaviours
    • Living with SMS
    • Sleep and SMS
    • Health
    • Facts about Smith-Magenis syndrome
    • Frequently asked questions
    • Find Support for SMS
  • Spotlight on SMS health
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  • Find Support for SMS
    • Small Grant Applications
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    • Emergency hospital documents for download
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  • Our SMS Community
    • Become a Member
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Meet the Staff

Helen Hargrave

Fundraising Manager

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.


Natasha Craven

Research and Administrative Assistant

Having recently completed her Undergraduate degree in Biomedical Science, Natasha has developed a great insight into the world of genetic disorders and their biochemical and medical background.  With particular interest in neurodevelopmental disorders, Natasha is continuing her studies in psychology with the aim of pursuing a career in Clinical Psychology. Her passion and drive for helping others has meant that Natasha also volunteers with charities such as Samaritans and Student Minds, whilst also working weekends as a Support Worker in a residential facility for individuals with autism and challenging behaviours.  

In 2020, Natasha interned with the Foundation working on the UK Demographics Study. This project was greatly successful and identified hundreds of individuals across the UK that were currently unknown to the Foundation. This project allowed Natasha to greatly hone her skills in research and data handling, and after the project was completed Natasha was invited to join the staff team as a Research and Administrative Assistant.  

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The Smith-Magenis Syndrome (SMS) Foundation UK CIO

Connecting Families, Raising Awareness, Building Futures

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Proud finalist of Keele University Breaking the Mould awards
SCA Terrific trustee award 2020
NUE Best Student contribution

Registered UK Charity (CIO) 1186647   ·  Scottish Charity (SCIO) SC050921    

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