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X-WR-CALDESC:Events for Pediatric Epilepsy Surgery Alliance
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DTSTART;TZID=America/New_York:20230210T140000
DTEND;TZID=America/New_York:20230210T160000
DTSTAMP:20260701T021011
CREATED:20230118T014733Z
LAST-MODIFIED:20250109T035607Z
UID:18156-1676037600-1676044800@epilepsysurgeryalliance.org
SUMMARY:Impacts of Epilepsy Surgery for Vision Educators
DESCRIPTION:Are you a vision teacher or orientation & mobility specialist working with students\, mentoring teachers in the field\, or helping teams? Do you want to learn more about students with epilepsy who have had VNS\, hemispherectomy\, or other types of epilepsy surgery?  \nPlease join the Pediatric Epilepsy Surgery Alliance for our live virtual school training session. This training will help vision educators understand the medical and functional effects of epilepsy surgery in childhood – large resective or disconnective procedures like hemispherectomy\, single or multiple lobectomies or disconnections\, corpus callosotomy\, or neuromodulation devices.  This training will focus on the impacts of epilepsy and epilepsy surgery on a child’s vision and mobility. We will also address other areas of impact\, as these children can be quite complex and may need myriad supports. \nThis training session will cover: \n\nAn understanding of ongoing seizures and drug-resistant epilepsy\,\nThe different surgeries/procedures and their descriptions\,\nThe impact(s) of the various procedures.\n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\n  \nMeet your trainer:\n \nMonika Jones\, JD\, is the visionary founder and executive director of the Pediatric Epilepsy Surgery Alliance. \nShe is: \n\nPrincipal investigator: Scientific Symposium on rehabilitation after hemispherectomy under a grant from the National Institutes of Health (2014); \nPrincipal investigator: Research meeting on functional outcomes after large resective/disconnective pediatric epilepsy surgery (2019) held in 2019; \nPrincipal investigator: Global Pediatric Epilepsy Surgery Registry;\nCo-Author: Disparities in Multi-Disciplinary Rehabilitation after Cerebral Hemispherectomy: A Patient-Centered Report from the Global Pediatric Epilepsy Surgery Registry; Etiology and Age Modifies Subjective Visual Function After Cerebral Hemispherectomy; Long-term patient reported outcomes of visual field defects and compensatory mechanisms in patients after cerebral hemispherectomy; Endocrine dysfunction after pediatric epilepsy surgery: a report from the Global Pediatric Epilepsy Surgery Registry; Knowledge gaps for functional outcomes after multilobar resective and disconnective pediatric epilepsy surgery: Conference Proceedings of the Patient-Centered Stakeholder Meeting 2019; Functional cognitive and language outcomes after cerebral hemispherectomy for hemimegalencephaly; Epilepsy Benchmarks IV: Limit or prevent adverse consequences of seizures and their treatments across the lifespan; Orthopedic impairments after hemispherectomy; Epilepsy community at an inflection point: translating research toward curing the epilepsies and improving patient outcomes\nMember\, CVI (Cortical Visual Impairment) CoLab (with C. Roman Lansky\, G. Dutton\, Perkins School for the Blind);\nMember: Education Committee\, Perkins School for the Blind; Board of Directors\, Council of Parent Attorneys and Advocates; Rare Epilepsies Network Steering Committee; Epilepsy Leadership Council; Infantile Spasms Action Network;\nMother to a child who had hemispherectomy at three months old; has met over 800 children who have had epilepsy surgery.
URL:https://epilepsysurgeryalliance.org/event/impacts-of-epilepsy-surgery-for-vision-educators/
LOCATION:Virtual Workshop
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/School-Training-for-Vision-Educators-Impacts-of-Epilepsy-Surgery.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230126T180000
DTEND;TZID=America/New_York:20230126T200000
DTSTAMP:20260701T021011
CREATED:20230124T182945Z
LAST-MODIFIED:20230124T190037Z
UID:18192-1674756000-1674763200@epilepsysurgeryalliance.org
SUMMARY:Seizing Hope virtual film screening
DESCRIPTION:Can new technology bring hope to children who have drug-resistant epilepsy?\nThe Pediatric Epilepsy Surgery Alliance was thrilled to co-host the USA Premiere of Seizing Hope: High Tech Journeys in Pediatric Epilepsy at the 2022 American Epilepsy Society Annual Meeting.  \nNow you have an opportunity to view this film during a virtual screening event with the Divisions of Bioethics and Pediatric Neurology at Columbia University. \nYou can register for this screening here! \nMore than 500\,000 children in Canada and the USA have epilepsy. About a third of those children continue to have seizures despite taking anti-seizure medications\, also known as pediatric drug-resistant epilepsy (DRE). Surgery may be one option for them\, but what if there is another option that is less invasive or more effective? What if new technology can bring hope to children who have DRE? \nThis mini-documentary is about hope for children and their families in mitigating and treating pediatric drug-resistant epilepsy (DRE). It is a story about how families learn to trust their medical team\, educate them\, and help them consider neurotechnology options for their child. It is a story about empowerment as loved ones shed light on the ethical factors that led to their decisions. In doing so\, they empower other families that face similar challenges. It is a story of how children and families affected by DRE can seize hope in times of darkness for a better quality of life. \nIn a world guided by the promises of technology\, the goal of Seizing Hope is to raise awareness about the options offered by different technologies specifically for the brain in complement or as an alternative to treatment with medication. The purpose of this documentary is to empower and improve decision-making by exploring values and priorities through the lens of the families and doctors who care for them. The stories of four families with children with pediatric DRE were compiled to shed light on their hope\, trust\, and empowerment journey. The views and research presented in this documentary represent a multi-year neuroethics project funded by the National Institute of Mental Health of the USA National Institutes of Health\, BRAIN Initiative. \nLearn more at https://www.seizinghopefilm.com/ \nFor upcoming screenings: https://neuroethics.med.ubc.ca/seizing-hope-high-tech-journeys-in-pediatric-epilepsy/#shscreenings \nFor more pediatric drug-resistant epilepsy and neurotechnological treatments resource materials\, please visit:  \n\nNIH Epilepsy Resources (Neuroethics Canada)\n\nAnd the resources from the Pediatric Epilepsy Surgery Alliance: \n\nAbout Epilepsy Surgery\nThe Risks of Drug-Resistant Seizures In Childhood \nThe Surgical Evaluation Process \nUnderstanding the decision-making process around RNS\, VNS\, and DBS \nNeurostimulation devices for pediatric seizures – What’s New?  \nDeep Brain Stimulation\nResponsive Neurostimulation (RNS) \nVagus Nerve Stimulation (VNS)
URL:https://epilepsysurgeryalliance.org/event/seizing-hope-virtual-film-screening/
LOCATION:Webinar
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/Neuroethics-Canada.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230118T200000
DTEND;TZID=America/New_York:20230118T210000
DTSTAMP:20260701T021011
CREATED:20230117T213135Z
LAST-MODIFIED:20230118T224509Z
UID:18137-1674072000-1674075600@epilepsysurgeryalliance.org
SUMMARY:Power Hour - Open Forum
DESCRIPTION:About Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \n\nAbout Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step towards empowerment! \n\nPlease note you must REGISTER IN ADVANCE here.
URL:https://epilepsysurgeryalliance.org/event/power-hour-open-forum/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221208T120000
DTEND;TZID=America/New_York:20221208T130000
DTSTAMP:20260701T021011
CREATED:20221012T164839Z
LAST-MODIFIED:20221208T112100Z
UID:17867-1670500800-1670504400@epilepsysurgeryalliance.org
SUMMARY:Power Hour - Open Forum
DESCRIPTION:We have a mantra at PESA: Knowledge is power. If you have to advocate for something for your child\, you must understand it!\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE here.
URL:https://epilepsysurgeryalliance.org/event/power-hour-7/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221130T150000
DTEND;TZID=America/New_York:20221130T160000
DTSTAMP:20260701T021011
CREATED:20221126T153745Z
LAST-MODIFIED:20250102T190958Z
UID:18022-1669820400-1669824000@epilepsysurgeryalliance.org
SUMMARY:Epilepsy surgery and rare genetic epilepsies
DESCRIPTION:When should you consider epilepsy surgery for your child’s rare genetic epilepsy? Join Dr. Ahmad Marashly\, Medical Director\, Pediatric Epilepsy Surgery Program\, Johns Hopkins Hospital\, and Monika Jones\, founder and Executive Director of the Pediatric Epilepsy Surgery Alliance (and rare epilepsy mom) to learn about: \n– an overview of surgery\n– the growing body of medical literature that supports brain surgery or neuromodulation for both palliative and sometimes curative surgery\n–the genetic disorders that cause refractory epilepsy including ion channel dysfunction\, sodium channel mutations. mTOR pathway and other conditions.
URL:https://epilepsysurgeryalliance.org/event/epilepsy-surgery-and-rare-genetic-epilepsies/
LOCATION:Webinar
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/11/Copy-of-Website-Events-Calendar-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221117T200000
DTEND;TZID=America/New_York:20221117T210000
DTSTAMP:20260701T021011
CREATED:20221012T164610Z
LAST-MODIFIED:20250109T035903Z
UID:17884-1668715200-1668718800@epilepsysurgeryalliance.org
SUMMARY:Coping Strategies
DESCRIPTION:Each one of us is human. Part of being human is having strong emotional reactions to a parenting experience that is continuously stressful and not what we’d imagined it would be. Understanding what is underneath our emotional experience and what is happening within us at a biological and emotional level when this occurs can help us respond more compassionately towards ourselves and our children. \nIn this Power Hour\, we will touch on coping skills that can help us thrive (vs simply survive) in this unique parenting experience\, including how to manage the inevitable impact on sibling relationships and the relationship between two parents when caring for a child with extraordinary needs. We will touch on what neuroscience research tells us about the importance of nervous system health and resiliency so that we can engage in meaningful activities that truly impact well-being. \n\nAbout Eileen Devine\, LCSW:\n\nEileen has over a dozen years of clinical experience and is the adoptive mother of a child with fetal alcohol syndrome. She believes that kids do well if they can and that when we understand the way a child’s brain works\, we then understand the meaning behind challenging behaviors. Eileen’s goal is to not only support parents in feeling more competent and confident in connecting with their child by parenting from a brain-based perspective\, but to also recognize their experience as the parent of a child with challenging behavioral symptoms and the impact this has on their sense of self and well-being. When these two sides of the neurobehavioral coin can be equally addressed\, there is less frustration and increased hope in this unique parenting journey. \nEileen has her License in Clinical Social Work and is a certified facilitator in the teaching and application of the neurobehavioral model\, as developed by FASCETS founder\, Diane Malbin.  She has also completed Tier 1 training in Think:Kids Collaborative Problem Solving. Eileen is an instructor for the Post-Master’s Certificate in Adoption and Foster Therapy through Portland State University’s Child Welfare Partnership\, training other therapists on the neurobehavioral model. \nFounder of the Brain First Parenting Program and The Resilience Room \nTune in! Brain First Parenting Podcast Mini-Series\n\n\n\n\nEileen Devine\, LCSW \n\n\n\n\nWhat is Power Hour? \nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with your questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery. \n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/coping-strategies/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/coping-strategies-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221109T120000
DTEND;TZID=America/New_York:20221109T130000
DTSTAMP:20260701T021011
CREATED:20221012T164126Z
LAST-MODIFIED:20250109T040034Z
UID:17868-1667995200-1667998800@epilepsysurgeryalliance.org
SUMMARY:Parent Perspective – Hemispherectomy for Rasmussen's Encephalitis
DESCRIPTION:How do they do it? How do other parents manage the many challenges after their child has epilepsy surgery?  Do you wish you had a “blueprint” of ideas and tools others have found effective? \nOur guest speaker\, Emily Marino (physical therapist and parent to Giulia\, who had a hemispherectomy)\, will share her daughter’s journey and what they have found to work (and what didn’t) after hemispherectomy surgery for Rasmussen’s Encephalitis \nEmily will discuss what they have done to address her needs in physical therapy\, occupational therapy\, speech and communication\, hearing\, vision\, assistive technology\, executive function\, and social skills. Her plan has empowered Giulia in the best way possible for a successful future. \nOther parents will share their experiences with different epilepsy surgeries in future Parent Perspectives. \n\n  \n\n  \n  \nWhat is Power Hour? \nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with your questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/parent-perspective-hemispherectomy-for-rasmussens-encephalitis/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/Emily-Giulia-event-image.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221028T173000
DTEND;TZID=America/New_York:20221028T200000
DTSTAMP:20260701T021011
CREATED:20221012T163326Z
LAST-MODIFIED:20221012T163326Z
UID:17871-1666978200-1666987200@epilepsysurgeryalliance.org
SUMMARY:Give for Hope™ Boo Bash
DESCRIPTION:Meet other families on the pediatric epilepsy surgery journey and celebrate our community at the beautiful French Embassy in Washington\, DC! \nThis event launches our Give for Hope™ campaign to raise funds for Dreams for Danny – our surgical evaluation travel scholarship program. This program provides up to $1\,000 in travel costs for families who seek a surgical evaluation at a level 4 facility more than fifty miles from their home. \nWe’ll have fun and games for the kids including a costume contest\, characters\, face painting\, and balloon animals. \nFrench hot and cold canapés\, kid-friendly pizza\, and refreshments included. Cash bar includes an exquisite collection of French wines to enjoy. \nSpeakers include: \nDr. Sandi Lam\, Division Head\, Neurosurgery\, Anne & Robert H. Lurie Children’s Hospital\, member of The Brain Recovery Project’s Board of Directors\, and Fundraising Committee member; \nDr. Taylor Abel\, Chief\, Pediatric Epilepsy Surgery\, UPMC Children’s Hospital of Pittsburgh and member of The Brain Recovery Project’s Scientific Advisory Board; \nDr. Ahmad Marashly\, Medical Director\, Pediatric Epilepsy Surgery Program\, Johns Hopkins Hospital. \nCostumes or cocktail attire encouraged. \nDate: October 28\, 2022 \nTime: 5:30 p.m. – 8:00 p.m. EST \nTickets: $30 per adult\, free for children. \nRaise or donate $250 and you’ll get to staff a trick or treat table\n  \nBuy Tickets or Donate \nDon’t forget to set up your own team fundraiser. \nIt’s the best way to support this important program. \nStart a Give for Hope™ Fundraiser  \nAre you interested in partnering with us for this event? Download our Give for Hope – Sponsorship Opportunities for more information. If you have questions\, or want to help organize a Give For Hope™ event near you\, contact Brittany Carver\, Development Associate\, at bcarver@brainrecoveryproject.org. \nTell your friends! Share this page or print this flyer. Boo Bash Flyer
URL:https://epilepsysurgeryalliance.org/event/give-for-hope-boo-bash/
LOCATION:French Embassy\, 4101 Reservoir Rd NW\, Washington\, DC\, 20007\, United States
CATEGORIES:Fundraiser
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221025T200000
DTEND;TZID=America/New_York:20221025T210000
DTSTAMP:20260701T021011
CREATED:20221012T163227Z
LAST-MODIFIED:20221012T165701Z
UID:17866-1666728000-1666731600@epilepsysurgeryalliance.org
SUMMARY:Power Hour
DESCRIPTION:We have a mantra at The Brain Recovery Project: Knowledge is power. If you have to advocate for something for your child\, you must understand it.\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE!
URL:https://epilepsysurgeryalliance.org/event/power-hour-5/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221013T120000
DTEND;TZID=America/New_York:20221013T130000
DTSTAMP:20260701T021011
CREATED:20221012T163348Z
LAST-MODIFIED:20221012T165727Z
UID:17865-1665662400-1665666000@epilepsysurgeryalliance.org
SUMMARY:Power Hour
DESCRIPTION:We have a mantra at The Brain Recovery Project: Knowledge is power. If you have to advocate for something for your child\, you must understand it.\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE!
URL:https://epilepsysurgeryalliance.org/event/power-hour-6/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220927T190000
DTEND;TZID=America/New_York:20220927T200000
DTSTAMP:20260701T021011
CREATED:20221012T163100Z
LAST-MODIFIED:20230316T041633Z
UID:17874-1664305200-1664308800@epilepsysurgeryalliance.org
SUMMARY:School-Based Audiology Assessments and Interventions After Epilepsy Surgery
DESCRIPTION:Often\, parents express concern about their child’s ability to learn. They may struggle with attention or behavior issues in the classroom setting. It’s important to consider the impacts of a central auditory processing disorder for a child after a temporal lobectomy\, hemispherectomy/hemispherotomy\, TPO (temporal-parietal-occipital lobectomy)\, or a corpus callosotomy. \nEven if your child has received a proper audiological evaluation and a diagnosis of a central auditory processing disorder\, sometimes the school doesn’t know how to best support the child. \nPlease join us for a special Power Hour with Clinical and Educational Audiologist Amanda Levy\, Au.D.\, and Daphne Magdaleno\, parent to a child with a hemispherectomy\, to discuss school-based audiology assessments and interventions. \nDr. Levy will discuss functional listening evaluations and acoustical evaluations of the classroom. Both presenters will discuss what parents can do to help educate and encourage your school’s audiologist to learn more about their child’s epilepsy surgery and its impacts. This session will be moderated by our Director of Patient and Family Advocacy\, Audrey Vernick. \nThis session is NOT an overview of central auditory processing disorder after epilepsy surgery. \nPlease review our previous content on this topic to be prepared for this session: \n\nAn Introduction To Cortical Auditory Impairment After Hemispherectomy\, TPO\, or Temporal Lobectomy\nStrategies for Cortical Auditory Impairment After Hemispherectomy\nWhat do I need to know about Central Auditory Processing Disorder?\n\nPresentations from our Pediatric Epilepsy Surgery Conferences: \n\n\n\nHearing After Hemispherectomy (Dr. Frank Musiek\, 2016)\nHow the Brain Hears (Dr. Frank Musiek\, 2019)\n\n\n\n\n\n\n\nPresentation slides\n\n\n\n\n\nAdditional resources:\n\n\n\nThe International Guild of Auditory Processing Specialists (IGAPS) has a directory of professionals who assess and treat auditory processing disorders.\nClassroom Acoustics (The American Speech and Hearing Association/ASHA)\nThe difference between auditory processing disorder and ADHD (Understood.com)\nDichotic listening after cerebral hemispherectomy: methodological and theoretical observations (de Bode 2007)\nChanges in Central Auditory Processing Following Temporal Lobectomies in Children (Cranford 1996)\n\n\n 
URL:https://epilepsysurgeryalliance.org/event/school-based-audiology-assessments-and-interventions-after-epilepsy-surgery/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/audiology-PH-event-image.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220818T200000
DTEND;TZID=America/New_York:20220818T210000
DTSTAMP:20260701T021011
CREATED:20221012T162922Z
LAST-MODIFIED:20221012T165753Z
UID:17864-1660852800-1660856400@epilepsysurgeryalliance.org
SUMMARY:Power Hour
DESCRIPTION:We have a mantra at The Brain Recovery Project: Knowledge is power. If you have to advocate for something for your child\, you must understand it.\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE!
URL:https://epilepsysurgeryalliance.org/event/power-hour-4/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220802T120000
DTEND;TZID=America/New_York:20220802T130000
DTSTAMP:20260701T021011
CREATED:20221012T162832Z
LAST-MODIFIED:20221012T165819Z
UID:17863-1659441600-1659445200@epilepsysurgeryalliance.org
SUMMARY:Power Hour
DESCRIPTION:We have a mantra at The Brain Recovery Project: Knowledge is power. If you have to advocate for something for your child\, you must understand it.\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE!
URL:https://epilepsysurgeryalliance.org/event/power-hour-3/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220721T170000
DTEND;TZID=America/New_York:20220723T220000
DTSTAMP:20260701T021011
CREATED:20220417T113748Z
LAST-MODIFIED:20220417T122414Z
UID:17278-1658422800-1658613600@epilepsysurgeryalliance.org
SUMMARY:Pediatric Epilepsy Surgery Family Conference
DESCRIPTION:If your child has had epilepsy surgery\, or may need it\, this conference is for you. Learn from some of the world’s top neuro-professionals\, educators\, researchers\, rehabilitation clinicians who will present rich sessions on issues related to pediatric epilepsy surgery. \nExhibitors will share their resources for our community and professional childcare is available so that kids have safe and supervised fun. \nJoin hundreds of families from around the world and enjoy two days of learning\, fun\, and fellowship against the backdrop of the spectacular Rocky Mountain range. \nOur conference theme this year is “Together We Climb.” It’s a reminder that even though sometimes obstacles seem insurmountable\, we’re all in this together. \nEarly bird rates end May 1st! Always free for adults who had surgery in childhood and children 4 and under. \nLEARN MORE
URL:https://epilepsysurgeryalliance.org/event/pediatric-epilepsy-surgery-family-conference/
LOCATION:Sheraton Park City\, 1895 Sidewinder Driver\, Park City\, UT\, 84060\, United States
CATEGORIES:Conferences
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/04/conference-event.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220714T190000
DTEND;TZID=America/New_York:20220714T200000
DTSTAMP:20260701T021011
CREATED:20221012T162446Z
LAST-MODIFIED:20221012T162446Z
UID:17860-1657825200-1657828800@epilepsysurgeryalliance.org
SUMMARY:Rescue medications for episodes of frequent seizures
DESCRIPTION:You are invited to join a free learning event for people living with episodes of frequent seizures––and for their care partners. You will have the opportunity to learn about managing seizures and the importance of an on-hand seizure rescue. \n\nLearn about episodes of frequent seizures (2 or more seizures in 24 hours that are different from usual seizures) and why you should always carry an on-hand seizure rescue treatment;\nDiscover the importance of having a Seizure Action Plan\, how to create one\, and must-have resources to help along the way.\n\n**This event is in partnership with Neurelis.
URL:https://epilepsysurgeryalliance.org/event/rescue-medications-for-episodes-of-frequent-seizures/
LOCATION:Virtual Workshop
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/spray.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220622T200000
DTEND;TZID=America/New_York:20220622T210000
DTSTAMP:20260701T021011
CREATED:20221012T162401Z
LAST-MODIFIED:20230316T042250Z
UID:17857-1655928000-1655931600@epilepsysurgeryalliance.org
SUMMARY:Power Hour
DESCRIPTION:We have a mantra at The Brain Recovery Project: Knowledge is power. If you have to advocate for something for your child\, you must understand it.\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE!
URL:https://epilepsysurgeryalliance.org/event/power-hour-2/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220608T120000
DTEND;TZID=America/New_York:20220608T130000
DTSTAMP:20260701T021011
CREATED:20220602T204044Z
LAST-MODIFIED:20230316T042216Z
UID:17482-1654689600-1654693200@epilepsysurgeryalliance.org
SUMMARY:Power Hour
DESCRIPTION:We have a mantra at The Brain Recovery Project: Knowledge is power. If you have to advocate for something for your child\, you must understand it.\n\nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with any questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.\n\n\nPLEASE NOTE! YOU MUST REGISTER IN ADVANCE!
URL:https://epilepsysurgeryalliance.org/event/power-hour/
LOCATION:Virtual Workshop
CATEGORIES:Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/power-hour-image-events.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220513T080000
DTEND;TZID=America/New_York:20220515T235900
DTSTAMP:20260701T021011
CREATED:20220417T123510Z
LAST-MODIFIED:20220418T155005Z
UID:17291-1652428800-1652659140@epilepsysurgeryalliance.org
SUMMARY:EpiCon
DESCRIPTION:EpiCon is a new\, national event hosted by the Epilepsy Foundation: “Connect with influencers\, learn from world-renowned experts\, join in candid discussions and engage in a variety of on-hands exhibits. Come meet new friends and create community with the people you care about.” From the EpiCon web page. \nOur founder\, Monika Jones\, will be part of two presentations: \n\nWhen Medication Doesn’t Work: Epilepsy Surgery Advancements and Options\nAfter High School\, What’s Next?: Exploring Young Adult Options In Education\, Employment\, and Living\n\nAges 18 and over only. \nLearn More
URL:https://epilepsysurgeryalliance.org/event/epicon/
LOCATION:Gaylord Opryland Hotel\, 2800 Opryland Drive\, Nashville\, TN\, 37214\, United States
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/04/Nashville.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220509T120000
DTEND;TZID=America/New_York:20220509T130000
DTSTAMP:20260701T021011
CREATED:20220417T121821Z
LAST-MODIFIED:20220417T122156Z
UID:17282-1652097600-1652101200@epilepsysurgeryalliance.org
SUMMARY:Safety Devices In Epilepsy
DESCRIPTION:Are you someone who has epilepsy? Or do you care for someone with epilepsy? This webinar will highlight ways to improve safety and independence in your daily life in places including: \n\nparks\npools\ngyms\nrecreation areas\n\nLindsay DeLong\, OT/L\, founder of EquipMe OT will share important information to help you have fun and stay safe. \nLearn how to improve safety and independence in community activities with special tools and techniques. Don’t miss this important webinar! \n  \nRegister Now\n  \n 
URL:https://epilepsysurgeryalliance.org/event/safety-devices-in-epilepsy/
LOCATION:Webinar
CATEGORIES:General
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/04/pool.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220428T190000
DTEND;TZID=America/New_York:20220428T200000
DTSTAMP:20260701T021011
CREATED:20220417T111002Z
LAST-MODIFIED:20230315T181521Z
UID:17269-1651172400-1651176000@epilepsysurgeryalliance.org
SUMMARY:AAC and Literacy After Epilepsy Surgery
DESCRIPTION:Some children in our community use augmentative and alternative communication (AAC) devices to communicate with others. Many parents wonder if proper reading instruction is part of their education. \n\n \n\nDoes your team know how to measure your child’s progress using AAC?\nDoes your team know how to support and model AAC use for your child throughout the day?\nHow does your child demonstrate knowledge and communicate during shared reading\, writing\, and word study?\nIs your team trained to use AAC?\nIs AAC used in other learning parts of the day?\n\n\n\nPlease join us as Dr. Stephanie Spadorcia helps us untangle some of these questions and more. \nStephanie Spadorcia\, Ph.D. is Associate Dean of the Graduate School of Education\, Associate Professor of Literacy and Special Education\, and Director of the Teacher Residency Programs at Lesley University in Cambridge\, MA.  She teaches courses in assessment\, instructional methods for reading and writing\, technology integration\, and literacy instruction for children with disabilities. She has worked with teachers on literacy and assessment initiatives in schools in New England and across the country. To learn more about Dr. Spadorcia\, go to https://www.stephaniespadorciaconsulting.com. \nDr. Stephanie Spadorcia \nWhat we discussed: \n\nWhat are literacy and communication?\nWhat is the difference between AT (assistive technology) and AAC (augmentative and alternative communication (AAC)?\nWhat is the emergent literacy model?\nWhat should reading instruction include?\nIs there dedicated instructional time in your child’s day\, every day\, for reading\, writing\, listening\, and communicating?\nAre there IEP goals that address all four of these areas?\nIs AAC use interwoven throughout the day in all four of these areas?\nHow do you teach a nonverbal or minimally verbal child to read?\nWhat about assessment or measuring progress?\n\nEssential Components of Daily Literacy Instruction: \n\nWord work\nComprehension\nWriting\nIndependent reading time\n\nDr. Spadorcia recommended 90-120 minutes of literacy instruction PER DAY in a child’s schedule that includes these 4 components. These minutes can be spread throughout the day. \nSuggested Assessment Tools: \n\nDevelopmental Writing Scale\n\nThe Developmental Writing Scale: A New Progress Monitoring Tool for Beginning Writers (Sturm 2012)\nThe Power of the Developmental Writing Scale (video)\nEffective Writing Instruction for Students with Developmental Disabilities: Curriculum\, Measurement\, and Accommodations\nUsing the Developmental Writing Scale for Writing Assessment | Jane Farrall Consulting\nWhat can assessment look like? (Alternative Pencils)\n\n\nMaze activity\n\nOn Progress Monitoring\, Maze Tests\, and Reading Comprehension Assessment (Reading Rockets)\n\n\nCloze activity\n\nUtilizing a Cloze Activity to Promote Decoding | Literacy for Students with Cognitive Disabilities\nDeveloping Fluent Readers (Reading Rockets)\n\n\nDevelopmental Spelling Test\n\nAssess the Child\, Find the Phase J. Richard Gentry – PDF Free Download\nDevelopmental Spelling Test – Teaching All Learners (Boston Public Schools)\nThe Gentry Developmental Spelling Test\nDeveloping a Written Productivity Profile: Conducting a Developmental Spelling Analysis (Montgomery Schools\, MD)\n\n\nInformal Reading Inventory\n\nInformal Reading Inventory (Qualitative Reading Inventory) (Reading Rockets)\nA Critical Analysis of Eight Informal Reading Inventories (Reading Rockets)\n\n\nWord identification assessment (Literacy Instruction for Individuals with Autism\, Cerebral Palsy\, Down Syndrome\, and Other Disabilities\, Penn State\, Janice Light & David McNaughton)\n\nResources Shared by Dr. Spadorcia: \n\nAAC Intervention (Caroline Musselwhite)\nAlternative Pencils | Center for Literacy and Disability Studies\nCenter for Literacy and Disability Studies\nEmergent Literacy model:\n\nTeale\, W.\, Sulzby\, E. Emergent Literacy: Writing and Reading. 1986 Norwood\, NJ: Ablex\nEmergent literacy (The Edmonton Regional Learning Consortium/ERLC)\nEmergent Literacy (Emilia Ferreiro\, The StateUniversity.com Education Encyclopedia)\n\n\nLiteracy and Disabilities – Stephanie Spadorcia Consulting\nMayer-Johnson PCS for Clicker : Spectronics – Inclusive Learning Technologies\nProloquo2Go – AAC app with symbols\nWhat are some types of assistive devices and how are they used? | NICHD\nRick Creech\, speech therapist and AAC specialist who was born with cerebral palsy. See also Reflections from a Unicorn (Creech 1992)
URL:https://epilepsysurgeryalliance.org/event/aac-and-literacy/
LOCATION:Virtual Workshop
CATEGORIES:Past events
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END:VEVENT
END:VCALENDAR