Charity news update from SUDEP Action CEO - Oct 2020 (SUDEP Action Day)
SUDEP Action: on the front-line of helping people with epilepsy, carers, health workers and grieving families, and adapting quickly to continue to meet the needs of those we support.
A lot has changed this year for many of us. What is constant at SUDEP Action is our primary focus on supporting those bereaved by epilepsy, and striving for better epilepsy risk awareness and tackling epilepsy deaths now.
Ongoing COVID-19 research
Thousands of people have already taken part in the research and have helped us to understand the effect of COVID-19 on epilepsy and risk, and on the suddenly bereaved. This November, SUDEP Action will be launching our COVID-19 rapid review on SUDEP and epilepsy deaths, with an online event, and we hope you will join us. Our research programme has already had impact and has helped us to use our limited funds in the most powerful way.
Our SUDEP Action team, and our supporters, know that campaigns must target where we can achieve greatest outcome. People need us to do that - to save many lives in the here and now. This is what the epilepsy sector and NHS RightCare recommendations prioritise, whilst we continue to also forge ahead with learning and research on deaths, especially during COVID-19.
Because of YOU, we have just launched the latest version of the SUDEP & Seizure Safety Checklist, along with a new information video about the safety tools; that will help us provide a gift at this time, from YOU, our supporters, to those in need.
We know that many families are saying that it has been an exceptionally hard and isolating time, and our thoughts go out to all of you - whatever your situation, and whatever your struggles.
SUDEP Action are here to support you, and have recently successfully fought for inquests for the newly bereaved, helping many to advocate that SUDEP and epilepsy are registered as the cause of death, when this is the case.
Creating global awareness
At SUDEP Action, awareness events and fundraising are special, and are always about remembering and paying tribute to loved ones. Our hearts go out to all those who have had to change their plans due to COVID-19. We hope you will continue to support us by sharing your stories, taking part in our virtual events and activities, or, by continuing to be creative in how you raise funds to support the continuation of our work during the pandemic.
On Friday 23rd October, SUDEP Action Day, we hope you will join us to connect, celebrate, raise awareness and remember together. Internationally, we will be leading nearly a hundred organisations with common knowledge and understanding about SUDEP, to continue to help people bust the myths that still persist even in the most surprising of places.
This year, we will be joining with the SUDEP Awareness Walk for a My Way to 5K virtual event - to raise awareness of SUDEP and epilepsy risks, and to remember together. We hope you will join us from wherever you are in the UK, or across the world, and take part. However you reach your 5K is up to you, walk, run, cycle, scoot, climb, row… the choice is yours. Whatever activity you choose, we will be together, sharing photos, messages and stories along the way.
We hope you will join us over the next few weeks and months to learn about the outcomes of our COVID-19 research on epilepsy and risk and on the suddenly bereaved, to raise awareness on SUDEP Action Day, and to take part in the SUDEP Action My Way to 5K.
Without your continued support we would not be here, and we are so grateful for the commitment you have already shown.
Please do remember that our support line continues to be there if you need it.
Take care and stay safe this Autumn,
Jane Hanna OBE
Main Office: 01235 772850
Support Line: 01235 772852
Email: [email protected]