Back
Print Friendly, PDF & Email

Meet the team

The Trustees and staff members that make up your Tuberous Sclerosis Association team

The Tuberous Sclerosis Association (TSA) is governed by a Board of Trustees, with sub-committees in place for specific areas of interest (such as finance and research). Along with our board, the TSA is ran by a small and dedicated team passionate about improving the lives of people affected by Tuberous Sclerosis Complex.

Board of Trustees and committees

Our Board of Trustees and committee groups help to set out the strategies and direction of the TSA. The Board works closely with the Chief Executive to monitor and evaluate the success of the TSA in delivering its objectives, as well as ensuring that the charity’s governance, vision and values – as set out by the five-year strategy – are upheld.

President

Dr Chris Kingswood

Hon Life Vice Presidents

Esther Galbraith

Tom Carter

Anne Carter

Christine Naylor

Trustee Officers

Chair – Sanjay Sethi  (Chair@tuberous-sclerosis.org)

Vice Chair – Martin Short

Treasurer and Company Secretary – Rob Vaughan

Other Trustees

Prof Patrick Bolton

Tom Carter

Annemarie Cotton

Dr Frances Elmslie

Dr Chris Kingswood

Jane Rogers

Lisa Suchet

Robert Woodthorpe Brown

Tom Carter

Sanjay Sethi

Martin Short

Rob Vaughan

Tom Carter

Sanjay Sethi

Lisa Suchet

Robert Woodthorpe Browne

Martin Short

Tom Carter

Chris Kingswood

Information about RESCOM, including the current committee members, can be found on the page Meet your research committee here.

Staff members

Our committed staff members come from a wide-range of different disciplines, including medical, social care, advocacy, research and communication backgrounds. These different experiences help the TSA team to drive forward improvements in the lives of people affected by TSC.

Senior team

Louise Fish (Chief Executive)

Louise is the TSA’s Chief Executive.  Prior to working at the TSA she supported patient charities, health profession associations and pharmaceutical companies as senior consultant on a wide range of strategic issues.  She was previously Director of Communications and Engagement at the NHS Confederation, and Director of Communications at the National Institute for Health and Care Excellence (NICE).

Office team

Mike Dodson (Administrator)

Mike Dodson is our new Administrator. Michael has extensive experience as an administrator in the private sector, and he has also coordinated support for students with additional needs at a school in London. Michael will be based in the office from 9-5 from Monday to Friday.

Support and information

Rachael Wyartt (Head of Support and Information)

Rachel joined the TSA in 2019 with a very strong background in working on the front-line of charity and health support roles. Most recently at the Helplines Partnership, Rachael has extensive experience in ensuring that health and social care organisations offer support services of the highest standard. Rachael is based in South-East England.

Julie Rainer (Information Officer)

Julie joined the TSA in 2017 as our Information Officer, and she is based in North-East England. Julie is responsible for ensuring that all information that the TSA and our advisers provide about TSC and accessing support for living with the condition – such as on our website, leaflets and guides – is clear, accurate and up-to-date. Prior to joining the TSA, Julie had a variety of educational and charity roles, most recently working as an Information Officer with Carers’ Resource.

Claire Kirk (Adviser)

Claire, who has been supporting the TSA community since 2015, as an adviser based in Northern Ireland. She is a registered Genetic Counsellor and was previously employed by the Northern Ireland Regional Genetics Service and the Department of Clinical Genetics, Our Lady’s Children’s Hospital Crumlin, Dublin. Claire’s previous role in the Regional Genetics Service was in coordinating a research study for children with rare genetic developmental disorders. In Dublin, Claire ran a Neurofibromatosis (NF) clinic, providing genetic counselling to patients and their families and organising onward referrals for screening

Melanie Feek (Adviser)

Mel has been an adviser at the TSA since 2017, focusing on supporting the TSC community around South-West England. Mel has previous experience of working across a number of areas including higher education, youth and community work, disability, mental health, advocacy and criminal justice, all within a supporting role working with adults, children and young people.

Fundraising

Mikaela Conlin-Hulme (Head of Income Generation)

Mikaela is responsible for income generation for the TSA. Contact her for queries relating to fundraising across major donors, events, community, corporate giving and trusts. She also oversees the charity’s supporter data systems to ensure excellent supporter care and efficient income processing.

Kathryn Harrison (Fundraising Manager)

Kathryn is our Fundraising Manager looking after our community fundraisers and our legacy and in memory program as well as give in celebration, Kathryn works Tuesday to Friday .

Tanya Darnton (Fundraising Manager)

Tanya is our Fundraising Manager looking after both community and corporate fundraisers and manages our payroll giving scheme. Tanya works Monday to Thursday.

Research

Dr Pooja Takhar (Head of Research)

Pooja joined the TSA from Asthma UK, where she has implemented the charity’s research strategy and built influencing and partnership opportunities as their
Research Operations Manager. Pooja previously worked as a Research Development Manager at Action on Hearing Loss, and has over 13 years’ experience
as a lab-based researcher including as a research fellow at Kings College London and Imperial College London. Pooja has a PhD in Immunology and an MSc in Genetics.

Bethan Vaughan (Research and Evidence Officer)

Bethan has a degree in BSc Genetics from Aberystwyth University. Brought up in Wales she now lives in Surrey where she is able to commute easily into London for research-related meetings and conferences. Bethan has two sisters, Katie, who has TSC, and Emma. It was Katie who inspired Bethan to pursue a career in genetic research.

Communications and events

Luke Langlands (Head of Communications and Engagement)

Luke is responsible for all internal and external communication and outreach at the TSA. Luke joined the TSA with a strong background in health and medical communications, having been part of a wide range of UK and Global teams for charities, pharmaceutical companies and healthcare professional societies. Luke is passionate about the power of effective communications to support and illustrate the work being done to improve people’s lives.

Charlotte Strain (Events and Communications Assistant)

Charlotte joined the TSA team in April 2019, having developed a wealth of experience in events management and communications. Charlotte is responsible for supporting the communications team across all platforms, as well as leading and supporting on all of the TSA’s flagship events throughout the UK.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.