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Voice Epilepsy Episode 25: Discussion on the Seizing Hope Documentary with Dr. Judy Illes from Neuroethics Canada

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iamavoiceforepilepsy에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 iamavoiceforepilepsy 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.

In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society Executive Director, Deirdre Syms, is joined by Dr. Judy Illes to discuss Seizing Hope - High Tech Journeys in Pediatric Epilepsy, a mini-documentary by Neuroethics Canada.

Seizing Hope is a mini-documentary that aims to ask the question “Can new technology bring hope to children who have drug-resistant epilepsy?” and documents the stories of four Canadian families in their journey to learn, understand, and explore the ethical trade-offs and decision-making values around modern technology for the brain.

These families guide viewers through their journey towards hope, trust, and empowerment in times of darkness for a better quality of life for their children who have drug-resistant epilepsy.

For more information on Seizing Hope, please visit https://www.seizinghopefilm.com/.

About our Guest: Dr. Illes is Professor of Neurology, Distinguished University Scholar, and UBC Distinguished Professor in Neuroethics. She is the Director of Neuroethics Canada, and faculty in the Centre for Brain Health and at the Vancouver Coastal Health Research Institute. In addition to her primary appointment in the Faculty of Medicine at UBC, Dr. Illes holds associate appointments in Population and Public Health and in Journalism at UBC, and in the Department of Computer Science and Engineering at the University of Washington in Seattle, WA, USA. She is the Vice Chair of the Canadian Institutes of Health Research (CIHR) Advisory Board of the Institute on Neuroscience, Mental Health and Addiction, Director-at-Large of the Canadian Academy of Health Sciences, and co-Lead of the Canadian Brain Research Strategy (www.canadianbrain.ca). She served as Vice Chair of the Standing Committee on Ethics of CIHR from 2013-2021. Dr. Illes held the Canada Research Chair in Neuroethics from 2007-2021. She received her PhD in Hearing and Speech Sciences, and in Neuropsychology at Stanford University, and is a pioneer of the field of neuroethics formally established in early 2000. Dr. Illes received the Order of Canada, one of the country’s highest awards for citizens, in 2017. She was elected to the Royal Society of Canada (Division of Life Sciences), and the American Association of Advancement of Science (AAAS, Division of Neuroscience) in 2012. She is also an elected member of the International Women’s Forum, an organization of more than 7000 women leaders around the world. Her latest books, a series on Developments in Neuroethics and Bioethics, feature pain, global mental health, do-it-yourself brain devices, and neuro-law. She writes frequently for the Vancouver Sun and Canada’s The Conversation Canada, and hosts community outreach about challenging ethical problems involving biomedicine and the brain throughout BC and across the country.

For more information on Neuroethics Canada, please visit http://www.neuroethicscanada.ca. You can also view infographics on epilepsy created by Neuroethics Canada at https://neuroethics.med.ubc.ca/res/nih-epilepsy-resources/.

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Manage episode 337577627 series 2926014
iamavoiceforepilepsy에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 iamavoiceforepilepsy 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.

In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society Executive Director, Deirdre Syms, is joined by Dr. Judy Illes to discuss Seizing Hope - High Tech Journeys in Pediatric Epilepsy, a mini-documentary by Neuroethics Canada.

Seizing Hope is a mini-documentary that aims to ask the question “Can new technology bring hope to children who have drug-resistant epilepsy?” and documents the stories of four Canadian families in their journey to learn, understand, and explore the ethical trade-offs and decision-making values around modern technology for the brain.

These families guide viewers through their journey towards hope, trust, and empowerment in times of darkness for a better quality of life for their children who have drug-resistant epilepsy.

For more information on Seizing Hope, please visit https://www.seizinghopefilm.com/.

About our Guest: Dr. Illes is Professor of Neurology, Distinguished University Scholar, and UBC Distinguished Professor in Neuroethics. She is the Director of Neuroethics Canada, and faculty in the Centre for Brain Health and at the Vancouver Coastal Health Research Institute. In addition to her primary appointment in the Faculty of Medicine at UBC, Dr. Illes holds associate appointments in Population and Public Health and in Journalism at UBC, and in the Department of Computer Science and Engineering at the University of Washington in Seattle, WA, USA. She is the Vice Chair of the Canadian Institutes of Health Research (CIHR) Advisory Board of the Institute on Neuroscience, Mental Health and Addiction, Director-at-Large of the Canadian Academy of Health Sciences, and co-Lead of the Canadian Brain Research Strategy (www.canadianbrain.ca). She served as Vice Chair of the Standing Committee on Ethics of CIHR from 2013-2021. Dr. Illes held the Canada Research Chair in Neuroethics from 2007-2021. She received her PhD in Hearing and Speech Sciences, and in Neuropsychology at Stanford University, and is a pioneer of the field of neuroethics formally established in early 2000. Dr. Illes received the Order of Canada, one of the country’s highest awards for citizens, in 2017. She was elected to the Royal Society of Canada (Division of Life Sciences), and the American Association of Advancement of Science (AAAS, Division of Neuroscience) in 2012. She is also an elected member of the International Women’s Forum, an organization of more than 7000 women leaders around the world. Her latest books, a series on Developments in Neuroethics and Bioethics, feature pain, global mental health, do-it-yourself brain devices, and neuro-law. She writes frequently for the Vancouver Sun and Canada’s The Conversation Canada, and hosts community outreach about challenging ethical problems involving biomedicine and the brain throughout BC and across the country.

For more information on Neuroethics Canada, please visit http://www.neuroethicscanada.ca. You can also view infographics on epilepsy created by Neuroethics Canada at https://neuroethics.med.ubc.ca/res/nih-epilepsy-resources/.

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In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society staff members, Sonia Ali and Christine Jamieson discuss driving and epilepsy, including how a person living with epilepsy can obtain their driver’s license in the province of British Columbia, as well as some transportation tips for people living with epilepsy who may be unable to obtain their driver’s license. For more information on the topics covered in this podcast, please check out an Information Sheet on driving and epilepsy from the BC Epilepsy Society website at https://bcepilepsy.com/files/Driving.pdf .…
 
In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society Executive Director, Deirdre Syms, is joined by Dr. Judy Illes to discuss Seizing Hope - High Tech Journeys in Pediatric Epilepsy , a mini-documentary by Neuroethics Canada. Seizing Hope is a mini-documentary that aims to ask the question “Can new technology bring hope to children who have drug-resistant epilepsy?” and documents the stories of four Canadian families in their journey to learn, understand, and explore the ethical trade-offs and decision-making values around modern technology for the brain. These families guide viewers through their journey towards hope, trust, and empowerment in times of darkness for a better quality of life for their children who have drug-resistant epilepsy. For more information on Seizing Hope , please visit https://www.seizinghopefilm.com/ . About our Guest: Dr. Illes is Professor of Neurology, Distinguished University Scholar, and UBC Distinguished Professor in Neuroethics. She is the Director of Neuroethics Canada, and faculty in the Centre for Brain Health and at the Vancouver Coastal Health Research Institute. In addition to her primary appointment in the Faculty of Medicine at UBC, Dr. Illes holds associate appointments in Population and Public Health and in Journalism at UBC, and in the Department of Computer Science and Engineering at the University of Washington in Seattle, WA, USA. She is the Vice Chair of the Canadian Institutes of Health Research (CIHR) Advisory Board of the Institute on Neuroscience, Mental Health and Addiction, Director-at-Large of the Canadian Academy of Health Sciences, and co-Lead of the Canadian Brain Research Strategy ( www.canadianbrain.ca ). She served as Vice Chair of the Standing Committee on Ethics of CIHR from 2013-2021. Dr. Illes held the Canada Research Chair in Neuroethics from 2007-2021. She received her PhD in Hearing and Speech Sciences, and in Neuropsychology at Stanford University, and is a pioneer of the field of neuroethics formally established in early 2000. Dr. Illes received the Order of Canada, one of the country’s highest awards for citizens, in 2017. She was elected to the Royal Society of Canada (Division of Life Sciences), and the American Association of Advancement of Science (AAAS, Division of Neuroscience) in 2012. She is also an elected member of the International Women’s Forum, an organization of more than 7000 women leaders around the world. Her latest books, a series on Developments in Neuroethics and Bioethics, feature pain, global mental health, do-it-yourself brain devices, and neuro-law. She writes frequently for the Vancouver Sun and Canada’s The Conversation Canada, and hosts community outreach about challenging ethical problems involving biomedicine and the brain throughout BC and across the country. For more information on Neuroethics Canada, please visit http://www.neuroethicscanada.ca . You can also view infographics on epilepsy created by Neuroethics Canada at https://neuroethics.med.ubc.ca/res/nih-epilepsy-resources/ .…
 
In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society Executive Director, Deirdre Syms is joined by Niomi Ndirangu, who is the 2022 winner of the Miss Kansas’ Outstanding Teen pageant and is a person living with epilepsy. Listen to this podcast to hear Niomi discuss her win and how she made history as the first African American Miss Kansas’ Outstanding Teen, her dreams of one day performing on Broadway and how she uses her platform to raise awareness of epilepsy and teach seizure first aid to the community. Niomi also talks about her “Train Up To Step Up” initiative where she helps educate members of the Kansas community about seizure first aid in the hopes that more people will learn how to help someone having a seizure. You can follow Niomi on the following social media platforms: Facebook: https://www.facebook.com/MKSOTEEN Instagram: https://www.instagram.com/maoteenks/…
 
In this episode of the Voice Epilepsy™ podcast, Sharareh Saremi, an Advocate at Disability Alliance BC, joins us to discuss the Registered Disability Savings Plan (RDSP). If you would like to learn more about the provincial and federal disability benefits available to people living with epilepsy in BC, visit the Disability Alliance BC website at www.disabilityalliancebc.org . You can also contact the Advocacy Access department at Disability Alliance BC for assistance in applying for disability benefits via telephone at 604-872-1278, Toll-Free at 1-800-663-1278 or via email at advocacy@disabilityalliancebc.org . Please note that this podcast features the audio from a webinar presented by the BC Epilepsy Society. To view the video version of this webinar with full PowerPoint slides, please visit https://www.youtube.com/watch?v=pYaD1pTg6R0 .…
 
In this episode of the Voice Epilepsy™ podcast, Sharareh Saremi, an Advocate at Disability Alliance BC, joins us to discuss the Disability Tax Credit (DTC). If you would like to learn more about the provincial and federal disability benefits available to people living with epilepsy in BC, visit the Disability Alliance BC website at www.disabilityalliancebc.org . You can also contact the Advocacy Access department at Disability Alliance BC for assistance in applying for disability benefits via telephone at 604-872-1278, Toll-Free at 1-800-663-1278 or via email at advocacy@disabilityalliancebc.org . Please note that this podcast features the audio from a webinar presented by the BC Epilepsy Society. To view the video version of this webinar with full PowerPoint slides, please visit https://www.youtube.com/watch?v=pYaD1pTg6R0 .…
 
In this episode of the Voice Epilepsy™ podcast, Sharareh Saremi, an Advocate at Disability Alliance BC, joins us to discuss Canada Pension Plan Disability (CPP-D). If you would like to learn more about the provincial and federal disability benefits available to people living with epilepsy in BC, visit the Disability Alliance BC website at www.disabilityalliancebc.org . You can also contact the Advocacy Access department at Disability Alliance BC for assistance in applying for disability benefits via telephone at 604-872-1278, Toll-Free at 1-800-663-1278 or via email at advocacy@disabilityalliancebc.org . Please note that this podcast features the audio from a webinar presented by the BC Epilepsy Society. To view the video version of this webinar with full PowerPoint slides, please visit https://www.youtube.com/watch?v=pYaD1pTg6R0 .…
 
In this episode of the Voice Epilepsy™ podcast, Sharareh Saremi, an Advocate at Disability Alliance BC, joins us to discuss the Persons With Disabilities (PWD) Designation. If you would like to learn more about the provincial and federal disability benefits available to people living with epilepsy in BC, visit the Disability Alliance BC website at www.disabilityalliancebc.org . You can also contact the Advocacy Access department at Disability Alliance BC for assistance in applying for disability benefits via telephone at 604-872-1278, Toll-Free at 1-800-663-1278 or via email at advocacy@disabilityalliancebc.org . Please note that this podcast features the audio from a webinar presented by the BC Epilepsy Society. To view the video version of this webinar with full PowerPoint slides, please visit https://www.youtube.com/watch?v=pYaD1pTg6R0 .…
 
In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society Executive Director, Deirdre Syms is joined by the Director of the UBC Interprofessional Health Mentors Program, Dr. Angela Towle, PhD, and long-standing Health Mentor, Lelainia Lloyd to discuss the UBC Interprofessional Health Mentors Program. The UBC Interprofessional Health Mentors Program will be running during the 2022-2023 school year from September 2022 to May 2023 and is looking to recruit 3-4 people living with epilepsy in BC to take part in the program. Listen to this podcast to learn about this unique educational program in which teams of students from different health disciplines and human service programs learn together from/with adults with a chronic condition/disability and/or caregivers who provide long-term care to a loved one with a chronic condition/disability. If you live in BC and have epilepsy or you care for someone who has epilepsy and you would like to share your expertise with students, please apply at https://meetingofexperts.org/programs-activities/health-mentors-program/ . Applications will be reviewed from June 2022 onwards for recruitment in September 2022.…
 
For some adults living with epilepsy, epilepsy surgery may be a potential option for seizure control. Our podcast on adult epilepsy surgery, entitled “An Overview of Adult Epilepsy Surgery” features the expertise of Dr. Chantelle Hrazdil, MD, FRCPC, who is a pediatric epileptologist at Vancouver General Hospital. Listen to this podcast to learn about the indications for epilepsy surgery, the process for epilepsy surgery evaluation, the different types of epilepsy surgery, and epilepsy surgery outcomes. Please note that this podcast features the audio from a webinar presented by the BC Epilepsy Society. To view the video version of this webinar with full PowerPoint slides, please visit https://www.youtube.com/watch?v=lp-4KlZebOQ…
 
For some children and youth living with epilepsy, epilepsy surgery may be a potential option for seizure control. Our podcast on pediatric epilepsy surgery, entitled “Epilepsy Surgery in Children and Youth: The Benefits of Early Surgery”, features the expertise of Dr. Mary Connolly, MB, BCh, BAO, FRCP(C), FRCP(I), FRCP(Edin) who is a pediatric epileptologist at BC Children’s Hospital. Listen to this podcast to learn more about the types of epilepsy surgery performed in the pediatric population; the evaluation for epilepsy surgery; and the evidence that early surgery is associated with improved outcomes. Please note that this podcast features the audio from a webinar presented by the BC Epilepsy Society. To view the video version of this webinar with full PowerPoint slides, please visit https://www.youtube.com/watch?v=8-r9kGdws0o…
 
In this episode of the Voice Epilepsy™ podcast, BC Epilepsy Society staff members, Sonia Ali and Christine Jamieson discuss service dogs for people with epilepsy, which are known as Seizure Response Dogs. Listen to this podcast to learn more about what a Seizure Response Dog is and does, as well as information on owning, training, certifying, and obtaining an epilepsy service dog. During the podcast, Christine also talks about her Seizure Response Dog, Eva, and discusses the path she took to get her trained and certified as an official service dog in the province of British Columbia. If this is something you are looking into and if you have any questions for Christine about this, you can email her at impactspeaker@bcepilepsy.com . Please see below for the links and contact information of the organization discussed during the podcast: Guide Dog & Service Dog Certification: https://www2.gov.bc.ca/gov/content/justice/human-rights/guide-and-service-dog The International Guide Dog Federation: https://www.igdf.org.uk/ Assistance Dogs International: https://assistancedogsinternational.org/ The Lion’s Foundation of Canada: http://www.dogguides.com/ | info@dogguides.com | 905-842-2891 BC & Alberta Guide Dogs: https://www.bcandalbertaguidedogs.com/ | info@bcguidedog.com | 604-940-4504 The Canadian Association of Guide & Assistance Dog Schools: http://www.cagads.com/ Key Companions Service Dogs: fur4all@home.com | 905-857-9547 West Coast Access: 604-485-6062 Paws4People: https://www.paws4people.org/ | info@paws4people.org | 910-632-0615 Paws with a Cause: 616-877-7297 Courageous Companions Incorporated: https://www.courageouscompanions.ca/ Red Dog Training Solutions: https://www.reddoginc.ca/ | 780-782-7318…
 
Chuck Carmen joins us on the Voice Epilepsy™ podcast as host Kim Davidson, the CEO & Executive Director of the BC Epilepsy Society and the Founder of the I AM A VOICE for Epilepsy Awareness™ campaign, interviews Chuck Carmen, the Executive Director of the Epilepsy Association and the founder of EpilepsyU and the EpilepsyStore to discuss all of the amazing things that he has done for epilepsy. Chuck Carmen has been the Executive Director of the Epilepsy Association since 1994 and only the second leader in the agency’s 59-year history. Selected by Southeast Association Magazine as one of the four most influential executives in the United States, he has served a board member of the Florida Society of Association Executives as well as the former Epilepsy Foundation of Florida and the Florida Epilepsy Services Providers Association. Chuck is also the Founder of EpilepsyU.com , an online epilepsy news and education site that now reaches and average of 3.8 million people every month in over 150 countries. He also founded the Epilepsy Association’s social enterprise, EpilepsyStore.com , an online epilepsy awareness product store where 100% of the proceeds support the programs of Association. Chuck’s long history in epilepsy has now made him the longest serving epilepsy executive director in the state of Florida. In addition to managing the day-to-day operations of the Epilepsy Association, his experience and knowledge has certified him as an “expert witness” where he has testified in numerous high profile cases involving epilepsy. Personally, he has conducted hundreds of presentations, seminars, and training programs on all aspects of epilepsy as well as becoming one of the nation’s leaders in the education and prevention of Shaken Baby Impact Syndrome.…
 
In this episode of the Voice Epilepsy™ podcast, host Kim Davidson, is joined by Registered Psychologist and PhD level Pediatric Neuropsychologist, Dr. Sarah J. Macoun to discuss the Dino Island research intervention from the University of Victoria (UVic) Dino Island is a cognitive intervention designed to improve attention and executive function abilities in children with neurodevelopmental concerns, special needs, and/or disabilities. Dino Island combines tablet-base gaming with ‘interventionist’ training tailored to non- professionals (such as parents, teachers, support workers, etc.) by introducing evidence-based strategies for teaching problem-solving techniques to children. This study is looking for participation from parents of children with neurodevelopmental issues and/or epilepsy. For more information on this study, you can visit http://uvicdinoisland.cogtrain.ca/ . To sign up to take part in this study, please visit http://uvicdinoisland.cogtrain.ca/contact/ .…
 
In this episode of the Voice Epilepsy™ podcast, host Kim Davidson, is joined by Psychologist, Dr. Patrick McGrath and Research Assistant, Chaya Seale from the IWK Health Centre to discuss the Strongest Families Neurodevelopmental Study (part of the CHILD-BRIGHT Network). The Strongest Families Neurodevelopmental Program, “Parents Empowering Neurodiverse Kids”, has been developed to deliver evidence-based care to families in the comfort of their own homes. Our program includes 11 skill-based education sessions, weekly telephone support from trained coaches, video/audio skill demonstrations, and a Parent-to-Parent online support group. This study is looking for participation from parents of children with neurodevelopmental issues and/or epilepsy. For more information on this study, you can visit www.crfh.ca/neuro or contact them by telephone by dialing 1-877-341-8309 and then hitting Menu Option 1 and then Menu Option 2. To sign up to take part in this research study, please visit www.mystudies.ca/studies/neuro .…
 
"I have many heroes and here is a special one … tens of millions worldwide know her! She's been honoured by the Queen, NASA and dignitaries from around the world … modest, humble, kind and Canadian. She is Cassidy Megan, Founder of International Purple Day® for Epilepsy Awareness." -Kim Davidson, Voice Epilepsy™ Podcast Host Cassidy Megan joins us on the Voice Epilepsy™ podcast as host Kim Davidson, the CEO & Executive Director of the BC Epilepsy Society and the Founder of the I AM A VOICE for Epilepsy Awareness™ campaign, interviews Cassidy to discuss all of the amazing things that she has done to grow global awareness of epilepsy. Listen to learn how Cassidy’s reach went beyond Earth’s stratosphere and into space when astronaut, Ricky Arnold, wore purple on the Space Station on Purple Day® and all of the staff at NASA's Mission Control Center in Houston were wearing purple as well. Or how she helped to set a Guiness World Record for the largest seizure first aid training session. And much more! Happy Purple Month and Happy Purple Day® everyone! You may find Cassidy on these social media platforms: Twitter: https://twitter.com/PurpleDay Facebook: https://www.facebook.com/PurpleDayforEpilepsy/ Instagram: https://www.instagram.com/purpledaymarch26/ TikTok: https://www.tiktok.com/@purpledaymarch26?lang=en YouTube: https://www.youtube.com/user/PURPLEDAYdotORG/featured Website: https://www.purpleday.org/ LinkedIn: https://www.linkedin.com/in/cassidy-megan-b3187583/…
 
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