Charity news update from SUDEP Action CEO - March 2021
This year our theme for Purple Day is #PurpleHeartsAtHome.
At a time when COVID-19 continues to dominate headlines and policy, we hope you will join with us in this creative way to raise awareness of epilepsy and epilepsy deaths.
Purple is the colour chosen for this international epilepsy day, and is also the special colour chosen as part of the SUDEP Action logo - to signify bereaved families sharing their experiences (through our Epilepsy Deaths Register).
Everyone who takes part by supporting our research meets all the SUDEP Action values to be:
The purple heart emoji is commonly used by many of us in our daily lives to signify someone or some activity that is special. As we put rainbows up in our windows last year for the NHS, we thought it was timely this Purple Day, to use the image of a purple heart with epilepsy, and SUDEP. Showing as an example of the very shocking and real struggle by families, charities, and health workers not directly caught up in the COVID-19 front line but who have been facing sudden deaths every day in the community.
As we look forward to the 'new normal' we need to make sure that epilepsy is seen and is heard and that we do not go back to the neglect of the past.
The mounting evidence we have gathered, shows the stark systematic nature of epilepsy deaths in the lead up to the pandemic and a worsening situation.
Not unique to the UK, we are also participating in the World Health Organisation call to action for epilepsy and neurological conditions. In New Zealand, COVID-19 has not dominated life and has not been the only story in town. There, evidence of our 25-year struggle and solutions for prevention is part of an ongoing national inquiry which has caught public attention.
Sharing purple hearts is a good way to start conversations as we emerge through the pandemic. When a teenage girl in an online assembly at a school in Reading, England recently asked me ‘did you ever feel like giving up’, the answer was, 'of course I had'.
In these uncertain times, as in the past, SUDEP Action’s values remain as important as ever and always help us move forward even when the circumstances around us are worsening. The children from this assembly are now making purple hearts and thinking about their own values, and the values of the school, the organisations around them and the charities they choose to connect with.
We would love you too to share your purple heart on 26th March. Imagine and create away, or if time is short just take a minute or two to share our social media and encourage anyone you know to join our #PurpleHeartsAtHome
Some of the SUDEP Action team are already creatively designing window displays for the 26th March or are capturing the imagination of the local community by leaving crochet purple hearts as a treasure hunt for people to find in their neighbourhood.
There are more ideas on our webpage and over in our Facebook event page, to help inspire you, along with a Purple Day quiz to help raise funds.
Just register with us via the link and you can access all the info and free #PurpleHeartsAtHome resources.
If you have any questions or would like some more ideas on how you can get involved, contact us on [email protected] or 01235 772850.
We are here to help in any way we can.
Stay well and keep in touch.
Jane Hanna OBE
Main Office: 01235 772850
Support Line: 01235 772852
Email: [email protected]