SUDEP Action

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Gathering success

Epilepsy Bereaved staged its biggest conference ever, thanks to the support of 100 researchers, families, clinicians and staff.

The annual gathering at Dunchurch Park Hotel, near Rugby, explored ways to reduce unnecessary deaths from epilepsy, while giving bereaved families the chance to meet old friends, make new ones and share experiences.

Doctors and nurses in neurology and patient care outlined the latest research and developments aimed at combating SUDEP and seizure deaths.
And families were given the opportunity to quiz a panel of experts, including Norfolk Coroner William Armstrong and Devizes MP Claire Perry, who used a Commons debate to call for a national register of epilepsy deaths to highlight the scale of the problem.

There was an update on charity news, fundraising through the year and the latest on the 2013 campaign.  Junior justice minister Jeremy Wright, whose Kenilworth and Southam constituency includes Dunchurch, said: “I have long been a supporter of the important work done by Epilepsy Bereaved. In the 17 years since it was formed, the charity has made great strides in supporting those bereaved by epilepsy and influencing research into and awareness of sudden unexpected death from epilepsy, which claims many young lives each year.”

‘Important’ conference

Ms Perry, who spoke to families during the weekend event, said: “EB is a fantastic charity that has succeeded in its global campaign to get SUDEP recognised and researched.  “It provides vital support and information for families who have been affected by the death of a loved one from epilepsy. Many describe it as a lifeline before and after inquests – and they value the opportunities the charity provides to bring researchers and families together. That’s why I was delighted to attend this year’s national conference at Dunchurch.”

EB’s director Jane Hanna said: “There’s no doubt this has been our best conference ever. There were so many developments in research and the charity to share with everyone, and it was great seeing so many of our supporters again, both old faces and new.”

Stephanie Mooney, the hotel’s meetings and events office manager, said: “We’re always pleased to welcome Epilepsy Bereaved to Dunchurch Park because the conference is very important in helping those who have been affected by the condition.”

A highlight of the weekend was music by Southampton band The Warm. Supporters were very touched to hear drummer Boyd Hayward open the set by paying tribute to his sister Rebecca, 28, who died suddenly in the summer.