SUDEP Action

Making every epilepsy death count
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SUDEP Action team change


The charity year has been as busy with internal change; new appointments and recruitment as it has with pushing forward with our research programme, services and safety tools. 

The nature of our cause, our work and our relationships across SUDEP Action whether Board, staff or supporters is that for many it involves long-standing service. The trustees and staff have been able to take a moment in July to reflect and say thank you to those that are retiring or changing their role. We look forward to welcoming supporters to our next weekend event in the summer of 2018 when we will celebrate journeys and achievements. You can send any personal cards in the meantime care of SUDEP Action. 

Board of Trustees

Jennifer Preston, John Lipetz and Guy Neely retired from the Board of Trustees on July 20th.  

Jennifer Preston, was one of the five who founded the charity; was instrumental in the development of the memorial services; first educational material in the world for people with epilepsy to include SUDEP and one of our international ambassadors and served as Vice-Chair of the Board.

Guy Neely, a former accountant has given long-service as Honorary Treasurer to the Charity.

John Lipetz, who gave a special contribution as a former Chair of the Charity and committee member of the National Audit of Epilepsy Deaths. 

The Board is delighted to welcome John Hirst CBE as the new Vice-Chair and Rachel Shah as the new Honorary Treasurer. John brings life-long experience of working in business and government and governance experience from the commercial, public and charity sectors. Rachel’s expertise includes her work for many years as an accountant.

Our staff team

Karen Osland who started with the charity in 2005 as Wales Outreach Worker will be retiring as Deputy Chief Executive and manager of services for families from October 1st. Any loss to the team is hard but Karen’s uniqueness to the organisation as Deputy CEO and manager of the community hub and support service is heart-felt. 

I am delighted as I am sure everyone is that Karen will be continuing with us at least until March 2018 in a new project management role focusing on the Epilepsy Deaths Register Project and a pilot advocacy project and ongoing advisory to Tracy Cowdry.  We are pleased that the existing service is to be strengthened with Professor Mike Kerr and Julia Stirling giving their time as volunteers to deepen and strengthening our expertise and experience to support Tracy help families with their engagement with the coronial service. 
There will be an opportunity to see and speak to Karen at the next Annual Conference planned for the summer of 2018 but anyone wishing to add a card to her retirement book please send this to the office. 

Roger Ambler is also retiring at the end of September as finance manager.  Roger was employed in 2014 and during his time as finance manager has supported us to move from a charitable trust to a new government recommended legal status in April 2017. 

Recruitments as well as promotions have been underway in the charity. We are pleased to announce, from 1st October: 

Sammy Ashby will be Director of Policy and Development and member of the Senior Management Team together with Jane Hanna. Recruitment has begun for a new Finance and Operations Role to join this team.

Tracy Cowdry is promoted to Bereavement Support Services Manager; Vicky to Community Services Supervisor and Katie to Community Services Support and Fundraising Coordinator.

This close team welcomes your contact, at any time.


Jane Hanna, CEO SUDEP Action