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EB hailed as ‘Worldwide inspiration’ in fight against SUDEP

UK charity Epilepsy Bereaved has been hailed as an international leader in the global campaign to eliminate SUDEP.


EB director Jane Hanna received the plaudits following her keynote address at the landmark conference in Chicago, which brought together epilepsy researchers, clinicians and families in the US for the first time.

Ms Hanna and the charity’s efforts in the fight against epilepsy deaths and SUDEP in particular, were credited for providing a catalyst to worldwide activity in the field.

Jeff Buchhalter and Gardiner Lapham, co-directors of the Partners Against Mortality in Epilepsy (PAME) conference, said: “Your personal efforts and those of Epilepsy Bereaved have provided inspiration for those of us in the United States and around the world.

“Epilepsy Bereaved has demonstrated the importance of advocacy organisations in helping to inform the lay community and professional societies.”

Epilepsy Bereaved is the only organisation in the UK dedicated to work to prevent unnecessary deaths from epilepsy, including SUDEP.

Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when someone with epilepsy dies suddenly - often after a seizure that involves a loss of consciousness.

EB funds and conducts research into SUDEP, carries out critical advocacy work to advance the issue with professionals and policy makers, and provides support to families.

Ms Hanna, who helped create Epilepsy Bereaved after she lost her 27-year-old partner Alan to SUDEP in 1990, said: “The PAME conference is a major achievement because it united researchers, clinicians and families in a commitment to take action on SUDEP and indeed, all epilepsy-related deaths.  “Although the challenge is a mountain to climb, we are at base camp with a clear pathway to the top.  We need a focused effort from the research and clinical community, advocacy groups and above all our funders, to move beyond SUDEP awareness to prevention of deaths.”

The three-day Partners Against Mortality in Epilepsy (PAME) conference discussed ways to foster knowledge and awareness among professionals, non-profit and government organisations in the fight against SUDEP.

During the meeting, the National Institutes of Health in the US announced over $3m (£1.9m) for research and surveillance of SUDEP.  Citizens United for Research in Epilepsy (CURE) agreed $1m (£642,505) in research funds and the American Society announced the development of US national clinical guidelines on SUDEP.