Press updates

Some of SUDEP Action Day’s press
releases and news updates.

 2018 

Epilepsy Action Australia - Have you heard of SUDEP?

 One year on from the 2017 announcement of their collaboration to share vital epilepsy risk information           across Australia, SUDEP Action and Epilepsy Action Australia (EAA) are continuing their positive work   together.

 With epilepsy affecting approximately 250,000 Australians, the partnership is keen to show the need for     further interventions, which would support risk communication and management between clinicians and     people living with epilepsy. Many people are unaware of the risks associated with epilepsy and the existence of Sudden Unexpected Death from Epilepsy (SUDEP) which is not often spoken about and this important ground work has the potential to improve epilepsy risk awareness and management, which has the potential to save lives.

Carol Ireland, Chief Executive Officer of Epilepsy Action Australia, says: “Our collaboration with SUDEP Action is fuelled by the clear demand in Australia from clinicians and people living with epilepsy for more support in managing their condition. It is great to work with SUDEP Action to meet this need and EAA are proud to support SUDEP Awareness Day.

We are committed to supporting increased research to find out the exact cause of the fatalities, which affects around 1 per 1000 people with epilepsy. An exact cause is unknown. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart. Risk varies from person to person so it is important for people to learn about their own epilepsy and work actively with their healthcare professionals to minimise the number of seizures.”

This year’s International SUDEP Action Day is on Tuesday 23 October. This day is dedicated to raising much-needed awareness of epilepsy risks and taking action against this silent but tragic consequence of epilepsy. It is also an opportunity to highlight the positive relationship and work already being done to tackle epilepsy-related deaths.

SUDEP Action CEO, Jane Hanna OBE said, “This is an exciting collaboration which is now in its second year. We know there is much that can be done now to reduce risks and look forward to working with Epilepsy Action Australia to achieve this across Australia.

SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.”

According to Epilepsy Action Australia CEO, Carol Ireland: “This SUDEP Action Day, I urge you to find out as much as you can about SUDEP by reading some of Epilepsy Action’s more detailed information here and then contact your doctor if you have any concerns about you or your family member’s medication and seizure control.

If you would like to become involved in helping promoting awareness, the official SUDEP Action Day page has a wealth of ideas including changing your social media covers or publicly displaying some of the great information posters available to download.

SUDEP Action Day provides an opportunity for us to truly take action on openly discussing SUDEP, and also for us to take a moment to consider the families of those who have lost someone as a result of epilepsy.”

For further information and to hear the latest news and updates about this collaboration as it develops visit:

www.epilepsy.org.au

www.sudep.org

Danny Did Foundation - October 23rd Marks International Day of SUDEP Action


The Danny Did Foundation has joined epilepsy organizations in the United States, Europe, Australia and around the world to recognize October 23rd as a global awareness day for Sudden Unexpected Death in Epilepsy, or SUDEP. The goals are to advance awareness about SUDEP, to encourage people with epilepsy to learn about SUDEP and their individual risk, and to honor the lives lost to the most common form of death in epilepsy.

This international collaboration has grown strong since 2008, and now in 2018, there is a multi-faceted movement to understand and prevent SUDEP. Initiated by families and advocates who were desperate for answers, this movement now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied to end sudden death in epilepsy by launching innovative research projects, awareness and educational campaigns, and bereavement support services.

Earlier this year, action in the U.S. featured a multiday event devoted to epilepsy mortality known as Partners Against Mortality in Epilepsy (PAME). The fourth PAME meeting took place June 14-16th in Alexandria, Virginia. Details about PAME are at http://pame.aesnet.org/.
UK-based nonprofit SUDEP Action – which created SUDEP Action Day – has participated in PAME meeting since 2012, enabling a deepening of the relationships across the pond and the opportunities to advocate together. The Epilepsy Foundation of America is among the nonprofits supporting SUDEP Action Day on October 23rd.

Tom Stanton, Executive Director of the Danny Did Foundation and Co-Chair of PAME said,
“This is the 5th time that we will celebrate SUDEP Action Day, which includes the opportunity to honour the special relationship with bereaved families in the UK and in the U.S and around the world. The SUDEP movement requires action and advocacy daily to bring us closer to prevention, but October 23rd is an especially powerful day when we can all share common messages and raise our voices together.
We lose thousands of people like Danny every year, and we urgently need funding and progress. We are grateful to SUDEP Action for taking the lead to engage all advocates around the world to take part.”

Jane Hanna OBE, CEO of SUDEP Action said, “It is great to have PAME’s support for this global initiative which is now in its fifth year. As it gathers momentum, it is so important that the international community rallies behind this cause; and to have such close relationships helps to drive this forward.”

 

About Danny Did Foundation
Founded by Chicago parents Mike and Mariann Stanton in 2010 after the sudden death of their four year-old son Danny, the Danny Did Foundation’s primary mission is to prevent deaths caused by seizures. The Foundation advances public awareness of epilepsy and Sudden Unexpected Death in
Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families affected by seizures, and advocates for the mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths.

Epilepsy affects 3.4 million people in the United States and 65 million people worldwide. One in 26 Americans will develop epilepsy during their lifetime. But what few people understand, including many people with the disorder, is that seizures can be fatal. More people die as a result of seizures than from fires and sudden infant death syndrome (SIDS) combined. The causes of death can vary and include drowning, other accidents and status epilepticus (prolonged seizures). In addition, thousands of deaths occur annually from SUDEP, a fact that is little known and too rarely addressed in public and in medical circles. The name of the Danny Did Foundation originates from the last line of Danny Stanton’s obituary,
written by his dad: “Please go and enjoy your life. Danny did.”

 

 

2017

23 October marks International Day of SUDEP Action
Epilepsy Organisations in the United States, Europe, Australia and around the world have joined to recognize October 23rd as a global awareness day for Sudden Unexpected Death in Epilepsy, or SUDEP. The goals for this day are to advance awareness about SUDEP, to encourage people with epilepsy to learn about SUDEP and their individual risk and to honor the lives lost to the most common form of death in epilepsy.

This international collaboration has grown strong since 2008, and now in 2017, there is a multi-faceted movement to understand and prevent SUDEP. Initiated by families and advocates who were desperate for answers, this movement now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied to end sudden death in epilepsy by launching innovative research projects, awareness and educational campaigns, and bereavement support services.

Progress in the U.S. is supported by a multi-day event devoted to epilepsy mortality known as Partners Against Mortality in Epilepsy (PAME). The fourth PAME meeting will be held June 14-16, 2018 in Alexandria, Virginia. Details about PAME are at http://pame.aesnet.org/.

The Epilepsy Foundation of America and the Danny Did Foundation are among the nonprofits supporting SUDEP Action Day on October 23rd.  UK-based nonprofit SUDEP Action – which created SUDEP Action Day – has participated in PAME meeting since 2012, enabling a deepening of the relationships across the pond and the opportunities to advocate together.

 

Tom Stanton, Executive Director of the Danny Did Foundation and Co-Chair of PAME said,

“This is the fourth time that we will celebrate SUDEP Action Day, which includes the opportunity to honor the special relationship with bereaved families both in the UK and in the U.S. The SUDEP movement takes daily action to bring us closer to prevention, but October 23rd is an especially powerful day when we can all share common messages and raise our voices together. We are grateful to SUDEP Action for taking the lead to engage all advocates around the world to take part.”

 

Jane Hanna OBE, CEO of SUDEP Action said,

“The special relationship we have with PAME and with many of the U.S. organisations has meant that distance has not been a barrier. The opportunities to share and for the SUDEP movements in both countries to support each other means we can make faster progress together.  The SUDEP movement is a success story so far only because we have not let geography get in the way.”

 

Tom Stanton Co-Chair PAME 2018                     

Jane Hanna OBE, CEO SUDEP Action

SUDEP Action partner with Epilepsy Action Australia for global awareness campaign
epilepsy-action-australia

 SUDEP Action has established an exciting new collaboration with Epilepsy Action Australia in time for SUDEP Action Day 2017. This collaboration provides the most current information related to epilepsy-related death to families across Australia.

Epilepsy affects approximately 250,000 Australians, and yet very few people are aware that people with epilepsy are at risk of Sudden Unexpected Death from Epilepsy (SUDEP).

The first phase of this project has seen Epilepsy Action Australia adopt SUDEP Action’s new information pages on epilepsy risks, mortality and risk reduction. They will also be distributing specially adapted versions of our information leaflets to clinicians, families, and people with epilepsy across Australia; starting with SUDEP Explained for Health Professionals and Reducing Risks leaflets.

Carol Ireland, Chief Executive Officer of Epilepsy Action Australia, said she was “delighted to launch this powerful partnership that she hopes will lead to more research, awareness and more lives saved. Ensuring people have a reliable source of information is the first important step. Through combining our strengths, we hope to reach as many professionals and families as possible across Australia,” said Carol.

This year’s International SUDEP Action Day is on Monday, 23 October, and is dedicated to raising much-needed awareness of, and taking action against this silent but tragic consequence from epilepsy.

SUDEP Action CEO, Jane Hanna OBE said: “We are excited about the shared commitment that this partnership represents to tackling SUDEP and epilepsy deaths in Australia. Collaboration is the best way to tackle this and maximise value to the epilepsy community.

SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.

For further information and to hear the latest news about this exciting collaboration visit:

www.sudep.org

www.epilepsy.org.au

You can also see Epilepsy Action Australia’s new video about SUDEP, which they will be using to help them raise awareness across Australia here.

UK Press

Exposure and supporter activity was busy for the 2017 event.

Here are just a couple of examples:

Clydebank’s Titan Crane lit up for SUDEP Action Day 

BlogsEpilepsy, pregnancy, motherhood and me

Coverage of supporter SUDEP awareness walk