BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Pediatric Epilepsy Surgery Alliance - ECPv6.16.4//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://epilepsysurgeryalliance.org X-WR-CALDESC:Events for Pediatric Epilepsy Surgery Alliance REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20210314T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20211107T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20220313T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20221106T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20230312T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20231105T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20230908T120000 DTEND;TZID=America/New_York:20230908T130000 DTSTAMP:20260628T181019 CREATED:20230822T010648Z LAST-MODIFIED:20250109T011011Z UID:18660-1694174400-1694178000@epilepsysurgeryalliance.org SUMMARY:Understanding Sensory Processing and Self-Regulation DESCRIPTION:Sensory processing is one of those terms that is commonly used\, but just as commonly misunderstood. For children who have had epilepsy surgery\, sensory processing difficulties may impact not only how they understand their worlds\, but how they think\, learn\, communicate\, move\, and so much more. \nPlease join us for an interactive discussion of sensory processing and regulation. We will gain a better understanding of what sensory processing is\, how it impacts our kids\, and what we can do to help them function better in their natural environments. \n\n\nAbout our speaker:\n\n\n\n \nLindy Joffe \nOTD\, OTR/L Doctor of Occupational Therapy (Post-Professional) \n\nLindy Joffe brings 23 years of experience to pediatric OT work. She completed her doctorate in OT through Boston University’s post-professional program in 2022 and her master’s at Columbia University in 1999. Lindy enjoys working with a range of ages\, from early intervention to adolescents and the occasional adult. She has taken a broad range of courses in sensory integrative principles\, DIR/Floortime techniques\, cognitive perceptual organization\, and Masgutova Neuromuscular Reflex Integration Techniques\, among others. Lindy is particularly interested in how the motor and sensory systems\, particularly the visual-vestibular-auditory triad and underlying reflex systems\, interact with the executive function system to propel an individual’s problem-solving abilities in three-dimensional and two-dimensional space. Lindy believes strongly in taking therapy beyond the clinic walls\, working closely with the child’s team to ensure maximal carry-over of therapeutic techniques into the child’s life. She has taught continuing education courses in sensory integration and problem-solving locally and nationwide. Lindy has a private practice in the San Francisco Bay Area. \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  \n\n\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! \nBy empowering yourself and your child\, you can 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 toward empowerment! \n\n  URL:https://epilepsysurgeryalliance.org/event/understanding-sensory-processing-and-self-regulation-2/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/08/Sensory-Power-Hour.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230831T130000 DTEND;TZID=America/New_York:20230831T140000 DTSTAMP:20260628T181019 CREATED:20230523T011621Z LAST-MODIFIED:20230523T011621Z UID:18526-1693486800-1693490400@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. \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! \nREGISTER HERE!\n\n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  URL:https://epilepsysurgeryalliance.org/event/power-hour-open-forum-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:20230823T120000 DTEND;TZID=America/New_York:20230823T130000 DTSTAMP:20260628T181019 CREATED:20230523T012311Z LAST-MODIFIED:20250109T011131Z UID:18527-1692792000-1692795600@epilepsysurgeryalliance.org SUMMARY:College Considerations After Epilepsy Surgery DESCRIPTION:Students after epilepsy surgery may have health conditions or physical disabilities requiring them to consider what support and accommodations they will need when transitioning to college. \nThe laws that govern accommodations change from high school to college\, as does the role of the student and guardian. \nThis Power Hour will look at the following: \n\nThe applicable laws that impact academic\, residential\, and programmatic aspects of college life.\nHow college has changed\, and the variety of college programs\, support programs\, and in-house assistance colleges may provide.\nCommon accommodations for students with physical disabilities and health conditions.\nPreparing students for college\n\nJoin us to learn about accommodations and services in college. How can you get the support you need for housing\, dining\, transportation\, academics\, and more? Our speaker\, Annie Tulkin\, will help you understand what to expect\, what to ask in advance\, what is the student’s role\, and what is the role of the disability support office.  \n\n\nAbout our speaker:\n\n\n\n \nAnnie Tulkin is the Founder and Director of Accessible College\, author\, and public speaker. She is an expert in the area of college preparation and transition for students with physical disabilities and health conditions. She supports students and families across the country. \nAnnie was the Associate Director of the Academic Resource Center at Georgetown University for nearly six years. In that position\, she supported undergraduate\, graduate\, and medical students with physical disabilities and health conditions and oversaw academic support services for the entire student body. Annie has worked in the disability field for her entire professional career\, including positions as a Regional Disability Coordinator for Humanitas\, Inc.\, working on the Job Corps disability support contract for The Department of Labor\, and as a Project Specialist with the Association of University Centers on Disabilities (AUCD) where she worked with both the National Service Inclusion Project (NSIP) and University Centers of Excellence in Developmental Disabilities (UCEDD) Technical Assistance projects. She holds a Bachelor’s Degree in Secondary Education from DePaul University\, a Master’s in Special Education from The University of Wisconsin-Madison\, and a Certificate in Health Coaching from Georgetown University. Annie was a Peace Corps Volunteer (Mongolia\, ‘03-’05) and a Fulbright Fellow (Mongolia\, ‘07-’08).  She resides in Silver Spring\, MD\, with her husband and daughter. \nWebsite: www.accessiblecollege.com \nFacebook: @AccessibleCollege \nTwitter: @AcssCollege \nInstagram: AccessibleCollege \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  \n\n\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! \nBy empowering yourself and your child\, you can 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 toward empowerment! \n\n  URL:https://epilepsysurgeryalliance.org/event/college-considerations-after-epilepsy-surgery/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2021/02/Untitled-design-41.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230726T120000 DTEND;TZID=America/New_York:20230726T130000 DTSTAMP:20260628T181019 CREATED:20230523T011424Z LAST-MODIFIED:20230725T101628Z UID:18524-1690372800-1690376400@epilepsysurgeryalliance.org SUMMARY:Power Hour - July 26\, 2023 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. \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! \nREGISTER HERE!\n\n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  URL:https://epilepsysurgeryalliance.org/event/july-26-2023/ 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:20230719T120000 DTEND;TZID=America/New_York:20230719T130000 DTSTAMP:20260628T181019 CREATED:20230523T005615Z LAST-MODIFIED:20250109T011302Z UID:18517-1689768000-1689771600@epilepsysurgeryalliance.org SUMMARY:Laser Ablation with Dr. Jeffrey Raskin DESCRIPTION:Laser Ablation – What You Need to Know \nAbout our speaker:\n\nJeffrey S. Raskin\, MS\, MD\, FAAP\, FAANS\, is an assistant professor and board-certified pediatric neurosurgeon. He completed his residency in the Department of Neurological sSrgery at Oregon Health & Science University and fellowship training in pediatric neurosurgery at Texas Children’s Hospital. He maintains specific interests in functional neurosurgery in children and serves as Director of Functional Neurosurgery at Lurie Children’s. Dr. Raskin is a member of the American Association of Neurological Surgeons\, Congress of Neurological Surgeons\, American Association of Pediatrics\, American Society of Pediatric Neurosurgery\, North American Neuromodulation Society\, and associate editor of Operative Neurosurgery. Dr. Raskin’s career goals include promotion to full professor of neurological surgery\, maximizing the national and international reputation of neurosurgical care at Lurie Children’s\, and serving the profession of neurological surgery through national representation. Dr. Raskin enjoys amateur bird watching\, art\, and culture with his wife. \n\nClinical Interests: Epilepsy\, movement disorders\, pain syndromes \n \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/laser-ablation-with-dr-jeffrey-raskin/ LOCATION:Webinar CATEGORIES:Webinar ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/05/Brain-scan-1200-×-628-px.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230706T130000 DTEND;TZID=America/New_York:20230706T140000 DTSTAMP:20260628T181019 CREATED:20230531T001331Z LAST-MODIFIED:20250109T011415Z UID:18549-1688648400-1688652000@epilepsysurgeryalliance.org SUMMARY:Future Planning - How to Prepare for Adulthood DESCRIPTION:Future Planning involves creating a plan for your child’s life as they enter adulthood and also preparing for when you are no longer here to care for them. In this Power Hour\, we’ll discuss creating a “future plan” and a “letter of intent.” \nWhat should your plan include? Here are some things you will need to think about: \n\nExpressing Wishes for the Future\nDeciding Where to Live\nFinancing the Future\nSupporting Major and Daily Life Decisions\nEmployment and Daily Activities\nMaking Social Connections\n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\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 they 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…. and more!\n\nWe believe that by empowering yourself and your child\, you can 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 toward empowerment! \n  URL:https://epilepsysurgeryalliance.org/event/future-planning-how-to-prepare-for-adulthood/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/05/Future-planning-1200-×-628-px.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230627T120000 DTEND;TZID=America/New_York:20230627T130000 DTSTAMP:20260628T181019 CREATED:20230523T003857Z LAST-MODIFIED:20250109T011542Z UID:18516-1687867200-1687870800@epilepsysurgeryalliance.org SUMMARY:Transition and the IEP - Part 2 DESCRIPTION:Regardless of their disabilities\, all children eventually become adults – physically and legally. Transition planning is about looking ahead at your child’s future life\, setting goals\, and determining what supports and services will be needed to help them succeed in adulthood. \nUnder the Individuals with Disabilities in Education Act (IDEA)\, students with disabilities are entitled to a free appropriate public education (FAPE) designed to meet the child’s unique needs and prepare them for further education\, employment\, and independent living. In fact\, the main purpose of IDEA is to ensure that all children with disabilities are “prepared to lead productive and independent adult lives\, to the maximum extent possible.” However\, children with disabilities are often described as “falling off a cliff” once they leave high school due to the failure of planning and implementing effective transition plans. \nTransition planning should help your child exit high school ready to start the rest of their life with a vision for their future and a plan in place. They may require support in adulthood – the transition IEP can help you spell out what supports your child will need and who will provide them. \nJoin us for this Power Hour “Transition and the IEP” with our Director of Patient and Family Advocacy\, Audrey Vernick\, to learn more about this process and how to prepare your child – and yourself – for what happens after high school. \nPlease note this is a two-part series.\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\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 they 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…. and more!\n\nWe believe that by empowering yourself and your child\, you can 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 toward empowerment! \n  URL:https://epilepsysurgeryalliance.org/event/transition-and-the-iep-part-2/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/05/Transition-Power-Hour-1200-×-628-px.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230620T120000 DTEND;TZID=America/New_York:20230620T130000 DTSTAMP:20260628T181019 CREATED:20230523T003609Z LAST-MODIFIED:20250109T011651Z UID:18514-1687262400-1687266000@epilepsysurgeryalliance.org SUMMARY:Transition and the IEP - Part 1 DESCRIPTION:Regardless of their disabilities\, all children eventually become adults – physically and legally. Transition planning is about looking ahead at your child’s future life\, setting goals\, and determining what supports and services will be needed to help them succeed in adulthood. \nUnder the Individuals with Disabilities in Education Act (IDEA)\, students with disabilities are entitled to a free appropriate public education (FAPE) designed to meet the child’s unique needs and prepare them for further education\, employment\, and independent living. In fact\, the main purpose of IDEA is to ensure that all children with disabilities are “prepared to lead productive and independent adult lives\, to the maximum extent possible.” However\, children with disabilities are often described as “falling off a cliff” once they leave high school due to the failure of planning and implementing effective transition plans. \nTransition planning should help your child exit high school ready to start the rest of their life with a vision for their future and a plan in place. They may require support in adulthood – the transition IEP can help you spell out what supports your child will need and who will provide them. \nJoin us for this Power Hour “Transition and the IEP” with our Director of Patient and Family Advocacy\, Audrey Vernick\, to learn more about this process and how to prepare your child – and yourself – for what happens after high school. \nPlease note this is a two-part series.\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  \n\n\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 they 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…. and more!\n\nWe believe that by empowering yourself and your child\, you can 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 toward empowerment! \n  URL:https://epilepsysurgeryalliance.org/event/transition-and-the-iep-part-1/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/05/Transition-Power-Hour-1200-×-628-px.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230617T210000 DTEND;TZID=America/New_York:20230618T000000 DTSTAMP:20260628T181019 CREATED:20230427T231941Z LAST-MODIFIED:20230611T125632Z UID:18456-1687035600-1687046400@epilepsysurgeryalliance.org SUMMARY:Summer Fun Fest DESCRIPTION:🗓 June 17\, 2023 \n⏱ 6 – 9 p.m. \n🍔 Burgers + 🍧 Kona Ice + 🥤 refreshments included \n🎟 $25 for adults/free for kids! \n♿️ Accessible for persons with special needs \n🚗 Free parking onsite! \nSummer Fun Fest is our new regional community engagement event that gives our families the chance to expand social connections with other families of children with epilepsy or who have experienced surgery to treat seizures. (Children of all abilities and needs welcome!) \nJoin us at Kid Space Museum in Pasadena\, California\, where children of any ability can explore\, learn\, and play in a safe and supportive environment. Get ready to engage your senses and have a blast with the interactive exhibits. \nThe event includes a great selection of burgers from Patty Meets Bun (including vegetarian and low carb)\, refreshments\, dessert from Kona Ice\, and resource fair featuring Livanova VNS therapy\, It’sYourEpilepsy.com\, California Mentor\, Orginami\, The Connected Parent\, Craft Studio Shop Store\, and Tully’s Training. \n\n\n\n\n\nYou’ll have exclusive access to the museum’s outdoor 3.5-acre grounds. Interactive exhibits include a physics forest where budding scientists can explore concepts such as levers and pulleys\, trajectory\, and momentum. There’s also a splash dance fountain\, trike track\, a giant hawk’s nest to climb on\, and a real creek to wade through! (Don’t forget towels and water-friendly footwear.) \nWith delicious food\, exciting exhibits\, and families who understand epilepsy\, this is one event you won’t want to miss! \n\n\n\n\n\n\n\n\n\n$25 for adults\, free for children. \nAll proceeds benefits the Pediatric Epilepsy Surgery Alliance\, a non-profit organization that serves the community of children who need neurosurgery to treat their seizures. \n\nDownload our event flyer to share with your friends and colleagues! Summer Fun Fest flyer (pdf) \n\nGet Your Tickets\n\n\n\n\nThank you to our event sponsors\nEPILEPSY SURGERY EVALUATION FINANCIAL AID SPONSOR\n$10\,000\n\n\n\n\n\n\nPATRON\n\n\n\nBRONZE\n\n\n\nFRIEND\n\nCalifornia Mentor\n\nSponsor Info\nDo you want to partner with us for this very special event? Download our Summer Fun Fest Sponsorship Package. \n\nCan’t Make It?\nYou can support the Pediatric Epilepsy Surgery Alliance by donating today.\n\n\nDonate URL:https://epilepsysurgeryalliance.org/event/summer-fun-fest/ LOCATION:Kids Space Museum\, 480 N Arroyo Blvd\, Pasadena\, CA\, 91103\, United States CATEGORIES:Fun ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230523T120000 DTEND;TZID=America/New_York:20230523T130000 DTSTAMP:20260628T181019 CREATED:20230118T015908Z LAST-MODIFIED:20230522T205905Z UID:18162-1684843200-1684846800@epilepsysurgeryalliance.org SUMMARY:Power Hour - Open Forum DESCRIPTION:Power Hour sessions are brought to you by our corporate sponsor UCB.\n\n\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-3/ LOCATION:Virtual Workshop 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:20230519T203000 DTEND;TZID=America/New_York:20230519T230000 DTSTAMP:20260628T181019 CREATED:20230308T152726Z LAST-MODIFIED:20230502T173040Z UID:18371-1684528200-1684537200@epilepsysurgeryalliance.org SUMMARY:Funny Fundraiser - Philly DESCRIPTION:Laugh out loud while you raise funds for our impactful programs and research. \n  \nGet Your Tickets \n  \n  URL:https://epilepsysurgeryalliance.org/event/funny-fundraiser/ LOCATION:Comedy Cabaret\, 625 North Main Street\, Doylestown\, PA\, 18901\, United States CATEGORIES:Fundraiser ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/03/Website-Events-Calendar-Image.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230513T120000 DTEND;TZID=America/New_York:20230514T150000 DTSTAMP:20260628T181019 CREATED:20230324T163752Z LAST-MODIFIED:20230326T185822Z UID:18405-1683979200-1684076400@epilepsysurgeryalliance.org SUMMARY:The Last Comiskey Premiere - Chicago DESCRIPTION:Celebrate “Last Comiskey\,” a new documentary about the unforgettable final season played at Comiskey Park. The event will include a screening of portions of the film\, followed by a Q&A featuring:\n\n* Nancy Faust — White Sox organist (1970-2010)\n* Donn Pall — White Sox pitcher (1988-1993)\n* Wayne Edwards — White sox pitcher (1990-1991)\n* Tom Shaer — Longtime Chicago Sportscaster\n* Matt Flesch — Producer/Director of “Last Comiskey” and board chair of the Pediatric Epilepsy Surgery Alliance\n* Additional guests to be announced prior to the event\n\nThe cost of admission is a $25 donation benefitting the Pediatric Epilepsy Surgery Alliance.\n\nBuy Your Tickets Now URL:https://epilepsysurgeryalliance.org/event/the-last-comiskey-premiere-chicago/ LOCATION:The Promontory\, 5311 S. Lake Park Avenue\, Chicago\, IL\, 60615\, United States CATEGORIES:Fundraiser ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/03/Lask-Comiskey-1.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230512T200000 DTEND;TZID=America/New_York:20230512T210000 DTSTAMP:20260628T181019 CREATED:20230501T230343Z LAST-MODIFIED:20230501T234225Z UID:18465-1683921600-1683925200@epilepsysurgeryalliance.org SUMMARY:Seizing Hope - virtual premiere DESCRIPTION:Friday\, May 12\, 2023\n 5 pm Pacific Time | 6 pm Mountain Time | 7 pm Central Time | 8 pm Eastern Time\n Free admission\n\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). \nBrain 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? \nABOUT SEIZING HOPE \nFamilies with children who have drug resistant epilepsy face complex realities. In 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. These options include \n\nvagus nerve stimulation\ndeep brain stimulation\, and\nresponsive neurostimulation.\n\nWatch as four families navigate decision-making around using various neuromodulation devices to treat seizures in their children. Here\, the producers compiled the stories of four families with children who have pediatric DRE to shed light on their hope\, trust\, and empowerment journey. \nThe 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. \nAfter viewing the documentary together\, panelists will answer questions presented by the moderator. \nMODERATOR \nMonika Jones\, JD\, founder and executive director of the Pediatric Epilepsy Surgery Alliance. \nPANELISTS \nDr. Judy Illes\, CM\, PhD\, FRSC\, FCAHS \nProfessor and UBC Distinguished Scholar in Neuroethics\, Director\, Neuroethics Canada\, University of British Columbia \nDr. Sandi Lam\, MD\, MBA \nDivision Head\, Neurosurgery; Yeager Professorship in Pediatric Neurosurgery\, Ann and Robert H. Lurie Children’s Hospital \nProfessor of Neurological Surgery\, Northwestern University Feinberg School of Medicine \nMember of the board of directors\, Pediatric Epilepsy Surgery Alliance \nDr. Taylor Abel \nAssociate Professor\, University of Pittsburgh School of Medicine \nChief\, Pediatric Epilepsy Surgery\, Surgical Director\, Pediatric Epilepsy Surgery Program\, UPMC Children’s Hospital \nMember\, scientific advisory board\, Pediatric Epilepsy Surgery Alliance \nCREDITS \nNeuroethics Canada UBC\, with funding from the NIH/NIMH BRAIN Initiative (#RF1MH117805-01) in association with Conexkt Innovation Studio And Cassiar Film CO. present Seizing Hope. \nFeaturing the Bagg\, Chartrand\, Thompson\, and Cowin families. \nExecutive Producers Dr. Judy Illes and Dr. Patrick J. McDonald. \nProduced by Dr. Johann Roduit. Directed by Adam Wormald \nLearn more about the film at https://www.seizinghopefilm.com/ \nGet Your Free Tickets URL:https://epilepsysurgeryalliance.org/event/seizing-hope-virtual-premiere/ LOCATION:Virtual CATEGORIES:General ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/05/Seizing-Hope-2.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230509T120000 DTEND;TZID=America/New_York:20230509T130000 DTSTAMP:20260628T181019 CREATED:20230208T151513Z LAST-MODIFIED:20250109T011825Z UID:18164-1683633600-1683637200@epilepsysurgeryalliance.org SUMMARY:Behavioral Health Wellness DESCRIPTION:Behavioral Health Wellness in Teens After Epilepsy Surgery\nIt can be difficult for both youth and their parents to navigate the teen years\, which can be full of change\, hormones\, risk-taking behaviors\, self-blame\, greater peer influence\, etc. In addition\, there are often a lot of questions about your teen’s behavioral health after epilepsy surgery. What is behavioral health? What concerns should I be aware of? What if my child doesn’t have any concerns – is this normal? When should I take action versus taking a deep breath and moving on? How do I talk to my child about behavioral health concerns? How do I ask for behavioral health services? This session is about managing depression and anxiety in teens who have had epilepsy surgery. Dr. Wagner will help you understand behavioral health and how to notice and address related concerns in your child. \n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\nAbout our speaker:\nDr. Janelle Wagner received her Ph.D. in Clinical Psychology from Oklahoma State University in 2004. She completed an internship and postdoctoral fellowship in pediatric psychology at the Medical University of South Carolina (MUSC)\, specializing in epilepsy. Dr. Wagner has dedicated her research career to the integration of medical and behavioral aspects of pediatric epilepsy\, focusing on behavioral health assessment and intervention within the context of self-/family management. She has been funded by the national Epilepsy Foundation (EF)\, Parents Against Childhood Epilepsy (PACE)\, the Pediatric Partnership for Epilepsy Research\, the Henkin Family Foundation\, the National Institutes of Health (NIH)\, and the Centers for Disease Control and Prevention (CDC). Dr. Wagner serves on committees and in leadership positions within national and international epilepsy research and clinical communities. Her findings have been published in over 100 respected peer review journal articles and book chapters. Dr. Wagner also has a personal experience with epilepsy as the sibling of a younger brother who was diagnosed with complex partial epilepsy in childhood. \n  \n \n\n\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! \nBy 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! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/behavioral-health-after-epilepsy-surgery/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/Behavioral-Health-Wellness-in-Teens-After-Epilepsy-Surgery.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230419T150000 DTEND;TZID=America/New_York:20230419T160000 DTSTAMP:20260628T181019 CREATED:20230118T015724Z LAST-MODIFIED:20250109T011937Z UID:18161-1681916400-1681920000@epilepsysurgeryalliance.org SUMMARY:About Neuropsych Assessments DESCRIPTION:Are you wondering about neuropsychological evaluations for your child before or after epilepsy surgery?\n\nJoin us to find out:\n\nWhat is a neuropsychological evaluation and why does it matter?\nHow is it different from all of the other evaluations my child has?\nHow do I get a neuropsychological evaluation?\nHow do I read/understand a neuropsychological evaluation?\nWhat do I do with the evaluation after we have received it?\n\nJoin our Director of Patient and Family Advocacy\, Audrey Vernick\, as we answer these questions and more.\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\nAbout Power Hour\n\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 toward empowerment! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/neuropsych-assessments/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/03/Neuropsychological-Assessments-1200-×-628-px.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230412T180000 DTEND;TZID=America/New_York:20230412T190000 DTSTAMP:20260628T181019 CREATED:20230328T015135Z LAST-MODIFIED:20230328T015522Z UID:18414-1681322400-1681326000@epilepsysurgeryalliance.org SUMMARY:Diagnóstico de Epilepsia\, Primera Consulta DESCRIPTION:En este webinar: \n\ncomprenderá la importancia de las características de las personas con epilepsia;\nSe delinearán los aspectos a tener en cuenta para el diagnóstico de epilepsia;\nEntenderá las indicaciones de los estudios solicitados;\nSe resaltará la importancia del diagnóstico correcto de epilepsia.\n\nPresentador: \n\nSebastian Ortiz De la Rosa\, MD\nInstituto Roosevelt\,\nUnidad de Epilepsia\,\nHospital San Jose Infantil URL:https://epilepsysurgeryalliance.org/event/diagnostico-de-epilepsia-primera-consulta/ CATEGORIES:Webinar ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/03/Latino-doctor.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230404T120000 DTEND;TZID=America/New_York:20230404T130000 DTSTAMP:20260628T181019 CREATED:20230118T015427Z LAST-MODIFIED:20250109T012111Z UID:18159-1680609600-1680613200@epilepsysurgeryalliance.org SUMMARY:All About ABLE Accounts DESCRIPTION:The financial aspects of caring for a child or adult with special needs can be daunting. This workshop will tell you all you need to know about ABLE accounts.\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n\n\n\nAbout our speakers:\n\n\n\nMary McDirmid\, Special Needs Financial Planner\, Special Abilities Network \nWhen Mary isn’t helping families navigate the world of special needs financial planning\, she is a wife to Jay and a mom to Charlie and Ruth. In addition to her leadership role at Special Abilities Network\, she is a volunteer advocate for kids with rare diseases. She takes the title “Mom Boss’ seriously; just ask her! Mary understands the emotional and financial aspects of caring for a loved one with special needs because she is the parent of a child with a rare disease. Let her guide you toward making educated financial decisions for your unique family situation. \n\n\nEric Ochmanek\, Program Director – ABLE Today\, National Association of State Treasurers (NAST) \nEric Ochmanek leads NAST’s ABLE today national initiative to advance financial empowerment for people with disabilities by increasing the awareness of ABLE accounts. ABLE today\, a collaborative outreach and awareness effort highlighting the impactful benefits of ABLE accounts for all ABLE Programs\, fosters the opportunity for people with disabilities to save and invest in their future. This includes providing ABLE education directly to the disability community\, establishing partnerships with stakeholders\, and engaging employers on the benefits ABLE provides as a tool for Diversity\, Equity\, and Inclusion. Eric helped launch Ohio’s ABLE Program in June 2016 and led its national outreach efforts. He traveled to each of the state’s 88 counties and throughout the country to connect people with disabilities with ABLE accounts and built partnerships within the disability community and the financial\, legal\, and support service industries. \nSara Hart Weir\, Senior Advisor & Former President + CEO of the National Down syndrome Society \nSara Hart Weir is a national ABLE expert\, nonprofit executive\, and disability activist. Weir is the former President & C.E.O. of the National Down Syndrome Society (NDSS)\, where during her tenure at NDSS\, she led the passage of the landmark\, bipartisan Stephen Beck Jr.\, Achieving a Better Life Experience (ABLE) Act in 2014 (P.L.113-295). Weir also supported a majority of the enactment of ABLE state laws\, assisted with over 40 state ABLE plan launches\, and led efforts to expand ABLE to include the ABLE to Work Act and the ABLE Financial Planning Act. Weir is also a national leader in driving public-private partnerships to ensure people with disabilities have a fair shot at the American Dream. Weir drives solutions that give individuals with disabilities access to a better life – from growing workforce development and career opportunities\, increasing access to quality\, affordable housing\, improving healthcare delivery systems\, and expanding inclusive education. Weir has a Bachelor of Arts in Psychology and Political Leadership from Westminster College and a Master of Science in Public Policy and Management from Carnegie Mellon University’s Heinz College. \n\n\n\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! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/all-about-able-accounts/ LOCATION:Virtual Workshop CATEGORIES:Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/All-About-ABLE-Accounts-.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230316T180000 DTEND;TZID=America/New_York:20230316T190000 DTSTAMP:20260628T181019 CREATED:20230306T010231Z LAST-MODIFIED:20230306T015644Z UID:18365-1678989600-1678993200@epilepsysurgeryalliance.org SUMMARY:What Doctors Don't Discuss with You and Why DESCRIPTION:Are you feeling overwhelmed by your epilepsy journey? You are not alone. The process of navigating life with epilepsy or as a caregiver to someone with epilepsy can be very intimidating and feeling like you are as prepared as possible is difficult to achieve. There are only so many things that a doctor can prepare you for and often times it is difficult to follow the medical verbiage that they use so nonchalantly. This webinar will focus on how to gather the resources you are looking for when living with epilepsy. Doctors are wonderful\, but don’t always have time to discuss ways to find daily support. If you are interested in learning more about the resources available to you\, join us on Thursday March 16th\, 2023 with our guest speaker Leigh Schommer. URL:https://epilepsysurgeryalliance.org/event/what-doctors-dont-discuss-with-you-and-why/ LOCATION:Webinar CATEGORIES:Webinar ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/03/Copy-of-Website-Events-Calendar-Image.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230315T120000 DTEND;TZID=America/New_York:20230315T130000 DTSTAMP:20260628T181019 CREATED:20230214T011538Z LAST-MODIFIED:20250109T012236Z UID:18288-1678881600-1678885200@epilepsysurgeryalliance.org SUMMARY:Getting Organized for the IEP Process DESCRIPTION:Are you overwhelmed with trying to keep track of your child’s IEP documents\, progress on goals\, important links\, and other information? Join us for a Power Hour with some tips on Getting Organized! \nWith our Director of Patient and Family Advocacy\, Audrey Vernick \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…. and more!\n\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 toward empowerment! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/getting-organized-for-the-iep-process/ LOCATION:Virtual Workshop CATEGORIES:Past events,Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/02/Copy-of-Copy-of-Brain-101-700-×-400-px.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230307T120000 DTEND;TZID=America/New_York:20230307T130000 DTSTAMP:20260628T181019 CREATED:20230118T011532Z LAST-MODIFIED:20250109T012334Z UID:18151-1678190400-1678194000@epilepsysurgeryalliance.org SUMMARY:Financial Planning 101 DESCRIPTION:The financial aspects of caring for a child or adult with special needs can be daunting. This workshop will provide you with an overview of what you need to do\, including:\n\n\nHow to address primary issues\nCreating a life care plan vision\nGuardianship and alternatives to guardianship\nIdentifying financial resources\nPreparing life care plan costs\nLegal instruments\nPreparing a letter of intent\nFamily meetings\nHow to review your life care plan annually\n\n\n\n\n\n\nAbout our speaker:\n\n\n\nMary McDirmid\, Special Needs Financial Planner\, Special Abilities Network \n \nWhen Mary isn’t helping families navigate the world of special needs financial planning\, she is a wife to Jay and a mom to Charlie and Ruth. In addition to her leadership role at Special Abilities Network\, she is a volunteer advocate for kids with rare diseases. She takes the title “Mom Boss’ seriously; just ask her! Mary understands the emotional and financial aspects of caring for a loved one with special needs because she is the parent of a child with a rare disease. Let her guide you toward making educated financial decisions for your unique family situation. \n\n\n\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! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/financial-planning-101/ LOCATION:Virtual Workshop CATEGORIES:Past events,Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/Financial-planning-overview.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20230302 DTEND;VALUE=DATE:20230307 DTSTAMP:20260628T181019 CREATED:20230213T010039Z LAST-MODIFIED:20230213T010111Z UID:18277-1677726000-1678071599@epilepsysurgeryalliance.org SUMMARY:Council of Parent Attorneys and Advocates Annual Conference DESCRIPTION:From the COPAA website: \nThis exciting conference sells out because of sessions\, events and networking opportunities that rejuvenate your spirit and hone your skills. To assure that every child you represent has a chance to learn\, to achieve and to contribute\, to graduate ready to attend college or pursue a career\, and to be a productive and contributing member of their community. \n\nAccess to high quality training\, the only conference of this kind in the country\nPeer to peer networking\nStrategize with the best and brightest in this field\nMeet service providers to fill your toolbox\nEngage while learning effective approaches to advocate and support students for best outcomes possible\nTypically approved for up to 22 CLE hours URL:https://epilepsysurgeryalliance.org/event/council-of-parent-attorneys-and-advocates-annual-conference/ LOCATION:Westin St. Francis\, 335 Powell Street\, San Francisco\, CA\, 94102\, United States CATEGORIES:Conferences ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/02/Copaa-logo.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230228T130000 DTEND;TZID=America/New_York:20230228T140000 DTSTAMP:20260628T181019 CREATED:20230117T232119Z LAST-MODIFIED:20250109T012538Z UID:18140-1677589200-1677592800@epilepsysurgeryalliance.org SUMMARY:Brain 101 DESCRIPTION:Join us for a parent-friendly introduction to the brain\, with a special focus on epilepsy surgery\, which will help you understand many of the terms and phrases used by neurologists and neurosurgeons.\n\n\n\n\n\n\nThe session will be presented by our founder\, Monika Jones\, JD. Although she does not have formal training in the field of neuroscience\, as part of her work with the Pediatric Epilepsy Surgery Alliance\, she has taken the initiative to educate herself on the brain. She has also published research in peer-reviewed medical journals and is the principal investigator of the Global Pediatric Epilepsy Surgery Registry. \n  \n  \n  \n \n\n\n\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! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/power-hour-brain-101/ LOCATION:Virtual Workshop CATEGORIES:Past events,Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/brain-event.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230221T120000 DTEND;TZID=America/New_York:20230221T130000 DTSTAMP:20260628T181019 CREATED:20230117T233801Z LAST-MODIFIED:20250109T035200Z UID:18146-1676980800-1676984400@epilepsysurgeryalliance.org SUMMARY:Empowering the Parent's Voice in the IEP Process DESCRIPTION:Empowering the Parent’s Voice in the IEP Process\nIt can be frustrating when parents try to advocate for their children and the school team denies their request. What do you say when the school refuses to provide an assessment in an area of suspected disability? What can you say if you believe your child needs more services than they receive\, but the school refuses? How do you answer the school team when they say your request is based on a “medical” model and not an “educational” one? This session will help you with terminology you can use during the meeting to help you help your child. \n\n\n  \n\nAbout our speaker:\nJulie Gardner\, Educational Specialist\, Kennedy Krieger Institute \n \n\n  \n  \n  \n  \n  \n  \n  \n  \nJulie is an Educational Specialist at Kennedy Krieger Institute.  She has a BA in Elementary Education and Specific Learning Disabilities (Flagler College) and an MA in Varying Exceptionalities (University of South Florida)\, and is currently in the EdD program at Slippery Rock University. Julie has over 30 years of experience in Special Education\, including the private and public sectors. She has worked as an administrator and IEP chair in public and private schools. She is also co-owner of J & A Educational Consulting\, which provides consultation and advocacy services to families involved in the general and special education system. \n\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\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/empowering-the-parents-voice-in-the-iep-process/ LOCATION:Virtual Workshop CATEGORIES:Past events,Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/Empowering-the-Parents-Voice-in-the-IEP-Process.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230216T130000 DTEND;TZID=America/New_York:20230216T140000 DTSTAMP:20260628T181019 CREATED:20230117T232312Z LAST-MODIFIED:20250109T035348Z UID:18143-1676552400-1676556000@epilepsysurgeryalliance.org SUMMARY:Anatomy of an IEP DESCRIPTION:Join our Director of Patient and Family Advocacy\, Audrey Vernick\, for The Anatomy of an IEP\nIn this session\, Audrey will dissect an IEP and show you how to include parent input into each part of the IEP to help ensure that your child receives an appropriate education. Print out a copy of your child’s IEP to take notes on that document as we go through the presentation.\n\n\n\n\n\n\n\n\n\n\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! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: URL:https://epilepsysurgeryalliance.org/event/power-hour-anatomy-of-an-iep/ LOCATION:Virtual Workshop CATEGORIES:Past events,Power Hour ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/IEP.png ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230210T140000 DTEND;TZID=America/New_York:20230210T160000 DTSTAMP:20260628T181019 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:20260628T181019 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:20260628T181019 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:20260628T181019 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:20260628T181019 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:20260628T181019 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 END:VCALENDAR