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The issue of SUDEP was first formally addressed, in North America, by the convening
of a SUDEP task force meeting in 2007. Further information regarding that meeting, and work since, can be found here.
The same year, to address the need for publicly available information about SUDEP and support
resources for families bereaved by SUDEP, SUDEP Aware was formed. With a primary goal to help raise awareness
within the healthcare and lay communities, our activities to date have included:
Raising awareness in 2012:
| June 21-24 | Presentations & organizing committee: first SUDEP-dedicated, Partners Against Mortality in Epilepsy (PAME) conference, Chicago.
Elizabeth Donner & Tamzin Jeffs | | March 6 | Briefings: to discuss epilepsy & SUDEP with Ontario's Members
of Provincial Parliament at Epilepsy Action Day, Legislative Building, Queens
Park, Toronto.
Tamzin Jeffs | | February 24 | Fundraiser:
in support of SUDEP Aware and to celebrate the life of Jordan Fawcett, 'Jordan's Slide for SUDEP', Beaver Valley Ski Club, Markdale, Ontario.
Elizabeth Donner
& Tamzin Jeffs | | February 4 | SUDEP discussion panel:
at Epilepsy Therapy Project's 'Family & Friends' Day, Epilepsy Pipeline Conference, San Francisco.
Tamzin Jeffs |
Raising awareness
in 2011:
| December 2 | SUDEP presentation: "SUDEP: What Families and their
Caregivers Want to Know" at the 25th Annual Advances in the Management of Epilepsy and the Epilepsy Clinic program,
Baltimore, USA.
Elizabeth Donner & Tamzin Jeffs | | November 19 | SUDEP presentation and promotion of SUDEP Aware's mission and goals at
2011 Annual Education Conference for Coroners & Pathologists, Toronto.
Elizabeth Donner | | May 27 | Presentation: "Sudden Unexpected
Death in Epilepsy" at the Centre for Forensic Science & Medicine 2010-2011 Seminar Series, Toronto.
Elizabeth
Donner | | April 11 | Presentation: "SUDEP: Efforts to Explain the Unexplained"
at the 63rd AAN Annual Meeting, 'Integrated Neuroscience - Childhood Epilepsy: Bench to Bedside' session, Hawaii.
Elizabeth Donner | | March 2 | Briefings: to
discuss epilepsy & SUDEP with Ontario's Members of Provincial Parliament at Epilepsy Action Day,
Legislative Building, Queens Park, Toronto.
Tamzin Jeffs |
Raising awareness in 2010:
| October 28-30 | SUDEP presentation and promotion of SUDEP Aware's mission
and goals at 2010 Annual Education Conference for Coroners & Pathologists, Toronto.
Elizabeth Donner & Tamzin Jeffs | | October 13 | Participants in CDC/NIH Epilepsy Mortality Surveillance Planning Meeting,
Washington DC.
Tamzin Jeffs & Elizabeth Donner | | October 1-3 | Promotion of SUDEP Aware's mission and goals at 2010 Canadian Epilepsy
Meeting, Kingston.
Tamzin Jeffs & Elizabeth Donner | | June 9 | Presentation: "Canadian SUDEP Register for Children" to
Canadian Pediatric Epilepsy Network, Quebec City.
Elizabeth
Donner & Tamzin Jeffs | | May 13-14 | Promotion of SUDEP Aware's mission and goals at Centre for Forensic Science & Medicine
Conference "Death Investigation and Forensic Medicine for Police, Coroners and Pathologists", Toronto.
Tamzin Jeffs & Elizabeth Donner | | March 22 | Presentation: "The Impact of
Sudden Death in Epilepsy" at American Association of Neuroscience Nurses, 42nd Annual Educational Meeting, Baltimore,
USA.
Thanks to funding by Epilepsy Foundation.
Tamzin Jeffs & Tess Sierzant (HealthEast Care System, St Joseph's Hospital, MN, USA) | | March 1 | Promotion of SUDEP Aware's mission and goals with Ontario's Members
of Provincial Parliament at an Information Session on Epilepsy for Purple Day, Legislative Building, Queens Park, Toronto.
Tamzin Jeffs | | February 24 | Presentation: "SUDEP: Case Studies" at Paediatric Rounds,
Toronto East General Hospital, Toronto.
Elizabeth Donner |
Raising awareness in 2009:
| December
4-8 | Promotion of SUDEP Aware's mission and goals at American Epilepsy
Society Annual Meeting, Boston, USA.
Elizabeth Donner & Tamzin Jeffs | | November 20-21 | Promotion
of SUDEP Aware's mission and goals at Pathology Update 2009, Toronto.
Elizabeth Donner & Tamzin
Jeffs | | November 9 | Presentation: "SUDEP: Case Studies" at 9th Annual Neuroscience Day at the Hospital for
Sick Children, Toronto.
Elizabeth Donner | | May
24 | Participant in Table Top Talk on 'SUDEP' at
World Federation of Neuroscience Nurses Congress 2009, Toronto.
Tamzin Jeffs | | April 29 | Presentation: "Sudden
Unexplained Death in Epilepsy: Case Studies" at Contemporary Clinical Issues and Case Studies Plenary Session,
American Academy of Neurology Annual Meeting 2009, Seattle, USA.
Elizabeth Donner | | April 22 | Presentation: "SUDEP:
Clinical, Personal & Ethical Considerations" at UHN Epilepsy Program Research/UTERP Rounds, Toronto Western
Hospital, Toronto.
Elizabeth Donner, Tamzin Jeffs & Christine Harrison | | March 31 | Promotion of SUDEP Aware's
mission and goals with Ontario's Members of Provincial Parliament at an Information Session on Epilepsy
for Purple Day, Legislative Building, Queens Park, Toronto.
Tamzin Jeffs | | March 6
| SUDEP presentation
at J.C. Richardson Neurology Subspeciality Day event, University of Toronto, Toronto.
Elizabeth Donner
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Raising awareness in 2008:
| November 19 | Presentation: "SUDEP: Clinical, Personal & Ethical Considerations" at Neurology Grand Rounds, Hospital for Sick Children, Toronto.
Elizabeth Donner, Tamzin Jeffs & Christine Harrison* | | November 12-14 | Participant & Session Moderator at SUDEP workshop, National Institute of Neurological Disorders and Stroke, Maryland, USA.
Elizabeth
Donner | | November 1 | Meeting for SUDEP-affected families, Toronto.
Elizabeth Donner & Tamzin Jeffs | | October 4
| Presentation:
"SUDEP: Clinical, Personal & Ethical Considerations" at Joint 7th Canadian Epilepsy Research Initiative (CERI) & Canadian Epilepsy Alliance (CEA) meeting, London, Ontario.
Elizabeth Donner, Tamzin Jeffs & Christine Harrison*
* SUDEP
Aware's co-founders, Dr Elizabeth Donner and Tamzin Jeffs, are very grateful to Dr Christine Harrison, Director Bioethics,
The Hospital for Sick Children, Toronto, for her generous donation of time and expertise towards these presentations. |
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