SUDEP Action

Making every epilepsy death count
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National Conference 2019

Conference 2019

 

What happened at the 2019 National Conference?

The National Conference 2019, in Leamington Spa was an emtional and inspiring event.

Allowing for supporters to spend valuable time together, building up new and existing relationships, and to hear the latest research and project updates from the charity.

It started with an interactive Q&A session with Dr Rhys Thomas and Dr Arjune Sen, on the Friday evening. The informal space helped set the scene for the Conference. Questions were asked about hot topics such as: cannabis, epilepsy risks, medications and post mortems.

If you have any concerns or questions about those topics, please do contact us - info@sudep.org

The Saturday morning was a similar format to last year - short update sessions by SUDEP Action team members and clinicians, followed by an interactive Q and A session. 
Here is just a snapshot of what was discussed on the Saturday, together with the presentations:

Jane Hanna OBE, highlighted the work that SUDEP Action have been doing since the last Conference, including new research, projects and a positive update on our Prevent21 appeal. Together, we helped 13,040 people last year via our bereavement services, The Epilepsy Deaths Register, EpSMon self-monitoring app and the SUDEP and Seizure Safety Checklist.

"Changing and saving lives, putting people first and providing life saving knowledge" - Jane Hanna OBE explaining the SUDEP Action mission and purpose.

 

PDF icon Jane Hanna OBE

 

Sammy Ashby, SUDEP Action Deputy CEO spoke about the ways in which our supporters and volunteers can help us.

"Debunking myths, sharing facts and empowering others to make change" - Sammy Ashby, Deputy CEO explaining about the importance of policy work. A short video and copy of the presentation are below (the sound is quiet, so please turn up the volume).

 

PDF icon Sammy Ashby

 

 

Karen Osland, Epilepsy Deaths Register (EDR) Special Projects Lead explained the importance of the Register. With nearly 800 reports, it's helping to shape and drive reasearch.

"More than a keeper of stories - its a catalyst for change" - Karen Osland

 

PDF icon Karen Osland

 

Tracy Cowdry, Bereavement Support Services Coordinator and Julia Stirling, Bereavement Case Worker provided a moving presentation about the immediate and enduring impact of epilepsy deaths for families. Also, how SUDEP Action's support service is a bespoke one - featuring advocacy, advice and emotional support.

 

PDF icon Tracy Cowdry & Julia Stirling

 

Professor Mike Kerr and Dr Arjune Sen presented the key findings and outcomes from the Prevent21 Summit in November 2018. Below is the link to the presentation, but if you wanted to know more about the Summit, take a look at our webpage.

 

PDF icon Prof Mike Kerr & Dr Arjune Sen

 

Rachel and Bharat Sumaria provided an update following their incredible journey on their Tuk Tuk to Turkey journey, in memory of their daughter Emily, last year.

 

PDF icon Tuk Tuk to Turkey

 

Fraser Morton shared an update video on how the A Life Electric project is going and the excting work that is coming soon. To find out more about Fraser, you can read his moving My Story, or visit A Life Electric.

 

Afternoon Workshops

The afternoon was an opportunity to have space or to come together in group discussions around:

  • How to help SUDEP Action reach their EDR goals
  • Campaigning for change - learning from supporters and charity experiences
  • Getting involved in a cause - how supporters have connected with SUDEP Action
  • How we can reach fundraising goals together

PDF icon Afternoon Workshops

 

If you would like to support our future work, or would like to be invovled in any way, get in contact with us today on info@sudep.org or call 01235 772850.

 

In the afternoon, we celebrated our wonderful supporters in a video showing just some of the brilliant fundraisers and volunteers who have raised funds & awareness for SUDEP Action in the past 12 months. Thank you to all of our supporters for all of your support and donations.

You can view that Supporter Achievement video below: