SUDEP Task Force
A task force, jointly convened by The American Epilepsy Society and the Epilepsy Foundation, was formed to assess
the present state of knowledge regarding SUDEP. This task
force, of which SUDEP Aware’s co-founder Dr Donner was a member, had five charges to: develop a position statement describing if, when, what, and how SUDEP should be discussed with
patients and their families and caregivers; design methods by which the medical and lay communities become aware of the
risk of SUDEP; recommend research directions in SUDEP; explore steps that organizations can take to perform large-scale, prospective
studies of SUDEP to identify risk factors; and identify possible preventive strategies for SUDEP.
The output of their meeting, in the fall
of 2008, is a report, published in Epilepsia (So et al 2008), that details recommendations. The major ones include: convening a multidisciplinary
workshop to refine current lines of investigation and to identify additional areas of research for mechanisms underlying SUDEP; performing a survey of patients
and their families and caregivers to identify effective means of education that will enhance participation in SUDEP research; conducting a campaign aimed
at patients, families, caregivers, coroners, and medical examiners that emphasizes the need for complete autopsy examinations
for patients with suspected SUDEP; and securing infrastructure grants to fund a consortium of centers that will conduct prospective clinical
and basic research studies to identify preventable risk factors and mechanisms underlying SUDEP.
The task force advises that the principal effort in preventing SUDEP should
be prompt and optimal control of seizures, especially generalized convulsive seizures.
Epilepsia (Nov 22, 2008)
Drops In Blood Oxygen Levels May Be Key To Sudden Death
In Some Epilepsy Patients
A new study by researchers at UC Davis Medical
Center suggests that the sudden unexplained deaths of some epilepsy patients may be a result of their brains not telling their
bodies to breathe during seizures.
Science Daily (Nov 25, 2008)
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SUDEP
in the US media:
Article: "A Brief Visitor with a Lasting Legacy - the story of one woman's
determination, vision and strength." By Lisa Boylan.
Turn to page 17, EpilepsyUSA Magazine (2010).
News Video: "Family Works to Prevent SUDEP". Mike Headrick discusses
the need for doctors to inform their patients about SUDEP.
Fox 31 News (Feb 15, 2010).
Community News, Chicago: "Little Boy Who Died Leaves Big Legacy". By Lindsey Tanner, Associated
Press medical writer.
Chicago Breaking News Center (Dec 24, 2009).
Community News, Colorado: "In Loss, a Mission". By Robyn Lydick.
Highlands Ranch Herald News (Nov 13, 2009).
Web-video and Audio Clips about SUDEP: "Mayo Clinic Physician Publishes Editorial on SUDEP".
Dr Elson So discusses SUDEP and Epilepsy.
Mayo Clinic News (Oct 26, 2009).
Community News, Virginia: "Tragic Loss Spurs Support for Epilepsy Awareness Walk"
Brandermill Community Association (Oct 12, 2009).
Article: "In the Grip of
the Unknown". By Jerry Adler and Eliza Gray.
Newsweek (Apr 11, 2009).
Radio broadcast: "Living With The Uncertainty of Epilepsy".
Talk of the Nation, with guests Warren Lammert and Dr Orrin Devinsky.
National Public Radio (Apr 28, 2009).
SUDEP-related
news articles from the UK media:
"Tributes to Yate Teenager Who
Died After Epileptic Fit."
Yate & Sodbury News, UK (June 04, 2009).
"Brother Running Marathon Following Epilepsy Death."
Bucks Free Press, UK (May 25, 2009).
"Mum's Walk in Memory of Daughter Kate."
Prestwich & Whitefield Guide, UK (May 24, 2009).
"Family's Mission of Support after Loss of a Child from Epilepsy."
Warrington Guardian, UK (May 21, 2009).
"Watford to Wiltshire Cycle Ride in Aid of Brother Who Died of Epilepsy."
Watford Observer, UK (May 20, 2009).
"Youth Worker Daniel Curtis Died from Sudden Unexpected Death in Epilepsy Syndrome."
Daily Echo, UK (May 01, 2009).
Dr Peter Carlen, clinical neurologist at Toronto Western Hospital, speaks with CTV’s
Canada AM about seizures and SUDEP.
CTV News (Jan 6, 2009)
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