Rosemary Panelli MPH PhD

 

Rosemary has worked in the field of epilepsy since 1995, developing programs and resources for patient support and community education. Her interest in epilepsy-related health policies and services led her to pursue a Master of Public Health and a PhD. SUDEP has been an issue of particular concern in Australia for more than twenty years and Rosemary has been involved in SUDEP action from the beginning, actively fostering international collaboration where possible. She served on the IBE Commission for Risks and Insurability and the IBE Research Committee. In 2011 she received the IBE Ambassador for Epilepsy Award.

Rosemary was invited to participate in an international SUDEP workshop held in Washington in 2008 and continues to participate in US SUDEP activities. She is an adjunct research associate of Monash University with a special interest in the pattern of epilepsy deaths recorded in the National Coronial Information System. Rosemary is also the part-time International Research Officer for SUDEP Action UK.

Experience in general practice management has allowed Rosemary to initiate some innovative approaches to epilepsy in this  setting, and she is continuing to develop strategies to improve epilepsy risk communication and management for general practice patients  (www.epilepsyingeneralpractice.com). As the CEO of a rural disability organisation since 2017 she is now working to ensure that SUDEP awareness in this sector is also high and that preventative stratetgies are in place.


Rosemary can be contacted at roseyjunep@gmail.com

Jane Hanna OBE MA BCL

 

Jane has worked in the field of epilepsy mortality since 1990 when her first partner, a young lawyer, died suddenly and unexpectedly in his sleep 6 months after being diagnosed with epilepsy. Jane co-founded and became CEO of SUDEP Action (the working name of Epilepsy Bereaved) eventually sacrificing her other career, as a law lecturer at Oxford University. Jane pioneered advocacy and services on SUDEP and epilepsy mortality and has worked with researchers, clinicians and families in the UK and around the world for twenty-four years. She was awarded an OBE from the Queen in 2010 and the Award for Social Accomplishment in Epilepsy given jointly by the International League Against Epilepsy and the International Bureau for Epilepsy in 2013. Jane has a husband Andy, daughter Kyra and step-son Matthew.

 

Jane can be contacted at jane.hanna@sudep.org

Tamzin Jeffs MSc MSc

 

Tamzin Jeffs is the Executive Director and co-founder of SUDEP Aware, a Canadian charity established in 2008, following the death of her youngest sister, Olly, to SUDEP. Tamzin has a background in forensic science and information security. As a Clinical Research Associate at the Hospital for Sick Children in Toronto, she worked on the implementation of Canada’s first registry of SUDEP deaths in children. She also assisted Epilepsy Toronto as a director on their board for five years. Tamzin lives with epilepsy and combines this insight with her experience of epilepsy-related loss as she makes her contributions to the SUDEP community. She lives in Toronto with her husband and two daughters.

 

Tamzin can be contacted at tcjeffs@sudepaware.org

Pauline Brockett Assoc Dip Lib RMIT BWC LaTrobe

 

Pauline Brockett  has 40 years of experience in diverse library services, most recently as the Library Manager of an epilepsy-specific library in Melbourne Australia for almost 16 years. In 2013 she added a Bachelor of Western Culture to her qualifications. As an epilepsy librarian it has been Pauline’s  practice to scan ‘literature alerts’ daily for the latest information on the psychosocial aspects of living with epilepsy and for selected clinical papers on issues relevant to  Support Services. These ‘alerts’ were forwarded to members of either a ‘General Alerts’ list or the ‘SUDEP Alerts’ list. The SUDEP alerts have underpinned the creation of a SUDEP and epilepsy mortality bibliography containing approximately 2500 references. This resource has been of great assistance to the development of the Global Conversation and other SUDEP projects.

Pauline’s work has brought her into close contact with many individuals and families who live with epilepsy. She has helped them to source information to guide them through their understanding and management of the condition. Since 2004 she has been the coordinator of an Australian biennial memorial service, held in remembrance of those who have lost their lives through epilepsy. Although Pauline has retired as a Library Manager she intends to continue searching the alerts on a daily basis and providing information to international contacts who express interest in receiving this invaluable specialised service. She will also be joining SUDEP Action as a specialist librarian.

Pauline can be contacted at pbepilepsyalerts@outlook.com

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