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)
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SUDEP-related
news from the UK:
Article: "'No Closure' for Mother
from Kirsty McQueen Inquiry."
Scotland Courier (Aug 21, 2010).
Article: "Tragic Katy Doyle's Family in Line for Top Award."
Sunday Sun (Aug 1, 2010).
Article: "Epilepsy Awareness Could Have Saved Son."
Banbury Cake (Jul 26, 2010).
Article: "Tragic Marske Teenager Died From Epilepsy".
Gazette Live (Jul 20, 2010).
Article: "Music Festival in Memory of Caernarfon Mum Who Died From Epilepsy Attack."
Caernarfon Herald (Jul 16, 2010).
Article: "Dedicated Pals Raise Money in Memory of Beloved Ellie."
Ilford Recorder (Jul 14, 2010).
Article: "Charity Fundraising Tribute to SUDEP Victim Jason Pycroft."
Barry & District News (Jun 29, 2010).
Article: "Relative's Early Death Inspires Charity Run."
Guardian Series (Jun 29, 2010).
Article: "Bereaved Mum - British 10K Charity Run After Son Stuart Powell's Sudden Death".
Camden New Journal (Jun 24, 2010).
Article: "Mum Raises £4k to Help Families Fighting Illness."
Gazette Live (Jun 5, 2010).
Article: "Family Try to Bring Good from Tragedy."
Bury Times (May 6, 2010).
Article: "Walkers Hoping to Raise £30k in Memory of Tragic Abbie Clarke."
Gazette Live (Apr 28, 2010).
Article: "We're Doing it in Memory of Lian."
Winsford Guardian (Apr 20, 2010).
Article: "Lakes Walk to Remember Richard on his 18th Birthday."
Whitehaven News (Mar 17, 2010).
SUDEP-related news from the US:
Article: "Unmasking Silent Killer in Epilepsy."
New York Times (27 Jul, 2010).
Article: "Group Continues Campaign Against Epilepsy."
Niles Herald-Spectator (Jun 23, 2010).
News Video: "Man Bikes Florida to Alaska for Charity."
KTVA CBS 11 News (Jun 18, 2010).
Community News, North Dakota: "Mom Loses Son to Epilepsy."
KX News (Jun 7, 2010).
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).
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