Formerly Deputy CEO, Sammy has worked across the charity’s various departments and platforms over a number of years. She was project lead on the initial development of the award-winning SUDEP & Seizure Safety Checklist and EpSMon projects as well leading on a vast array of pivotal and important research projects working closely with partner organisations and clinicians. Her vast knowledge and personal approach is taking the charity forward.
Tracy is a registered member of BACP who heads up our counselling service to the bereaved. Working closely with the Community Services Supervisor and the Bereavement Case Worker, Tracy also contributes greatly to the charity’s wider objectives of improving understanding of SUDEP and other epilepsy deaths, including the Epilepsy Deaths Register. A longstanding member of the team, Tracy has helped shape so much of what SUDEP Action does.
Paul is responsible for the effective financial administration of the charity and supports the CEO and trustees on key internal operations. Ensuring every penny works for the charity is a key consideration for SUDEP Action, and Paul’s skills and qualities come to the fore in everything from managing office contracts to in-depth financial accounting.
Rob has worked in journalism / the charity sector for many years and oversees internal and external communications. Contact Rob if you’re looking for further information about SUDEP Action’s work or would like to discuss media interviews / opportunities and stories.
Katie heads up fundraising and is the go-to person if you’d like to discuss anything relating to an event or a donation. Whether you need help getting an idea off the ground, wish to discuss a legacy or gift or have specific questions about a fundraiser you are organising, Katie would love to hear from you.
Jane is a co-founder of the charity and a former CEO with considerable expertise as a global advocate and expert in SUDEP. Her contributions to the advancement of the understanding of epilepsy risks are world renowned. Awarded the OBE in 2010 and a Social Accomplishment Award in 2013, Jane remains a driving force in gaining wider recognition of SUDEP. In her new role for SUDEP Action, Jane’s focus is chiefly on policy making and bringing about further change.
Sarah’s work supports the smooth and efficient running of the charity’s operations, providing high level support to the CEO and the management team. It’s a big role with diverse responsibilities, incorporating HR and policy work. Her efficiency, ideas and dedication bring many facets of the charity’s work together and make them tick.
Vicky is in many ways the face – and voice – of the charity, providing the main point of contact for anyone getting in touch via phone and email. Vicky also oversees countless connections with supporters and volunteers, providing invaluable administrative and personal know-how in the community and across the wider SUDEP Action teams.
Julia works with the Bereavement Services Manager to provide an advocacy service for families who are seeking help in the aftermath of an epilepsy-related death. She supports the development of charity relationships in the investigation of a death and guides families through legal processes that can be both complex and challenging. Julia also liaises with coroners and clinicians on the behalf of families.
Ben is responsible for an important portfolio of projects that includes leading on the Epilepsy Deaths Register and liaising with support groups, key stakeholders and clinical and research champions. Ben works closely with the Digital Projects Manager and the CEO to feed directly into a lot of ground-breaking new reports that are helping SUDEP Action stay at the forefront of exciting research developments.
Kezie joined SUDEP Action in 2023 to lead on a wide range of important projects, including pioneering research work, and the further development of EpSMon and the SUDEP and Seizure Safety Checklist. He’s bringing fresh insights to a project to make the Checklist available in Ireland, as well as the development of a Safety Checklist for children.
Jo is an experienced member of the comms team who looks after the website day-to-day. With strong all-round skills, particularly in digital, Jo is helping us share our stories in new ways to a wider audience.
Hannah looks after the charity’s social media platforms day-to-day, ensuring we share key messages and timely details about our work, as well as engaging on the charity’s behalf with supporters online. She’s quickly become a valued member of the team.
Lauren is the newest member of the team, joining us in July 2024. Lauren says: “I’m looking forward to working with the amazing staff at SUDEP Action and helping raise important funds with our incredible supporters.”
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
