PAME Conference 2018
I am truly honoured to have been at the 2018 Partner’s Against Mortality in Epilepsy (PAME) Conference. Well done and a huge thank you to the organisers.
The people and energy behind global efforts gives great hope for the future. It was great to meet new, as well as long-standing advocates in the US movement. This powerful partnership between families, researchers and clinicians, committed to tackling deaths, remains the driving force for change wherever you go.
Before our presentations during the Creating Urgency & Change: Understanding and Preventing Mortality in Epilepsy session, Rosey (our International Consultant) and I were also able to meet some of the contributors to the SUDEP Global Conversation; keep an eye out for updates to their research summaries about SUDEP.
(Pictured: Rosey Pannelli, Jane Hanna OBE - stood next to poster from UCL Child Institute and Royal College of Paediatrics' poster publication of UK and Ireland study on child deaths)
A huge thanks to absolutely everyone who is helping with Prevent21 and our 1000 voices campaign - which gave, not only inspiration, but the content for my talk on UK advocacy.
Our evidence for advocacy is stronger than ever – I am personally looking forward to taking on anyone who continues to use the word `rare’ when talking about SUDEP child deaths. We have battled on this since the 1990’s – it has taken too long for the evidence to emerge, but we have it now!
And thanks to the Burns family’s support of our Prevent21 campaign, we are proud that SUDEP Action was able to show early results from our partners at UCL Child Institute and Royal College of Paediatrics of National Surveillance, on child deaths in UK and Ireland.
After the PAME Conference, I spent time at the ‘Temple’ exhibition in the Renwick Gallery in Washington – where visitors are invited to write a wish, hope or remembrance on a wooden block and leave it in the Temple. It was an incredibly powerful visual and emotional space. Taking this time to reflect helped me to connect with this movement as an expression of grief, and it was a moving tribute to all those who have died since the 1990’s. There really would be no effort to stop deaths today, without the courage of bereaved families.
The vision of our community is to one day see all people with epilepsy and their families given the knowledge and support they need to help them keep safe, is truly achievable.
Those that can help make this happen - NEED TO LISTEN.
The need is urgent and we have powerful evidence and free tools to help.
The SUDEP Action team and I are really looking forward to meeting families at our National Conference in July, and all our UK partners at our Prevent 21 Summit – Time to Listen, later this year. More news on this exciting event will be released soon and I am looking forward to updating everyone with emerging work in the field.
Jane Hanna OBE
Inside the 'Temple' of the No Spectators: The Art of Burning Man exhibition at the Renwick Gallery, NW, Washing D.C
(In memory of all those who have lost their lives to epilepsy. We celebrate your lives. We advocate to make change. Jane and all the UK families)
Dr. Martin Luther King Jr memorial
(We shall overcome because the arc of the moral universe is long but it bends toward justice)
Dr. Martin Luther King Jr - Stone of Hope Lincoln Memorial Reflection Pool