BEGIN:VCALENDAR VERSION:2.0 PRODID:-//DEE-P Information Resource Center - ECPv6.17.2//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://deepconnections.net/azb X-WR-CALDESC:Events for DEE-P Information Resource Center 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: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 BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20260308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20261101T060000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Los_Angeles BEGIN:DAYLIGHT TZOFFSETFROM:-0800 TZOFFSETTO:-0700 TZNAME:PDT DTSTART:20220313T100000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0700 TZOFFSETTO:-0800 TZNAME:PST DTSTART:20221106T090000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0800 TZOFFSETTO:-0700 TZNAME:PDT DTSTART:20230312T100000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0700 TZOFFSETTO:-0800 TZNAME:PST DTSTART:20231105T090000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0800 TZOFFSETTO:-0700 TZNAME:PDT DTSTART:20240310T100000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0700 TZOFFSETTO:-0800 TZNAME:PST DTSTART:20241103T090000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0800 TZOFFSETTO:-0700 TZNAME:PDT DTSTART:20250309T100000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0700 TZOFFSETTO:-0800 TZNAME:PST DTSTART:20251102T090000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20250527T200000 DTEND;TZID=America/New_York:20250527T210000 DTSTAMP:20250512T153140Z CREATED:20250424T182656Z LAST-MODIFIED:20250512T153140Z UID:7462-1748376000-1748379600@deepconnections.net SUMMARY:DEE-P Chat: Relationships 101 Follow-up DESCRIPTION:Join us\, for a follow up with your partner for a “DEE-P Chat” with other couples to feel seen and heard. Amanda and Anne will be in attendance to answer your questions as well! Not in a relationship or your partner can’t make it? You are still invited to come and learn! URL:https://deepconnections.net/azb/event/dee-p-chat-relationships-101-follow-up/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/04/Relatioship-101.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250512T130000 DTEND;TZID=America/New_York:20250512T140000 DTSTAMP:20250424T185627Z CREATED:20250424T185626Z LAST-MODIFIED:20250424T185627Z UID:7465-1747054800-1747058400@deepconnections.net SUMMARY:Real Moms\, Real Stories: Advocacy That Inspires DESCRIPTION:Join us\, for an inspiring and down-to-earth conversation with six incredible moms who are walking the path of advocacy for their disabled children. \n\n\n\nThey’ll share personal stories—real\, raw\, and powerful—about how they’ve stood up\, spoken out\, and made meaningful changes in their children’s lives\, from navigating schools and healthcare systems to building inclusive communities. \n\n\n\nWhether you’re taking your first steps into advocacy or simply looking for connection and encouragement\, this webinar is for you. These moms will show that advocacy doesn’t have to be big or loud to be impactful—it just has to come from the heart. Come listen\, feel inspired\, and leave empowered. URL:https://deepconnections.net/azb/event/real-moms-real-stories-advocacy-that-inspires/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/04/Real-Moms-Real-Stories.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250422T200000 DTEND;TZID=America/New_York:20250422T210000 DTSTAMP:20250402T184227Z CREATED:20250402T184226Z LAST-MODIFIED:20250402T184227Z UID:7413-1745352000-1745355600@deepconnections.net SUMMARY:Relationships 101 - Marriage & Parenting a Medically Complex Child DESCRIPTION:Join us\, as Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) unpacks the realities of working on your marriage while parenting a child with disabilities and medical complexities. \n\n\n\nWe’ll dig into the topics that sometimes feel impossible to repair: conflict\, communication\, resentment\, and intimacy. It’s not easy – but we are far from doomed. We hope you’ll leave this webinar feeling encouraged\, seen\, and understood! URL:https://deepconnections.net/azb/event/relationships-101-marriage-parenting-a-medically-complex-child/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2025/04/Relationships.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250314T120000 DTEND;TZID=America/New_York:20250314T130000 DTSTAMP:20250313T132744Z CREATED:20250305T192738Z LAST-MODIFIED:20250313T132744Z UID:7308-1741953600-1741957200@deepconnections.net SUMMARY:The Life-Saving Nature of Epilepsy Surgery DESCRIPTION:Epilepsy surgery is not a last option and you will hear why as during this session we update you on emerging research around the efficacy and utility of surgical interventions and discuss guidelines on when families should seek out consultation about epilepsy surgery options. Join us as we partner again with the Pediatric Epilepsy Surgery Alliance to follow up on our last epilepsy surgery webinar. \n\n\n\nOur guests are: \n\n\n\nTaylor Abel\, MD\, Chief of Pediatric Neurosurgery and the Surgical Director of the Pediatric Epilepsy Surgical Program at UPMC Hospital for Children in Pittsburgh. He is also on the American Epilepsy Society’s and Pediatric Epilepsy Surgery Alliance’s board of directors. \n\n\n\nMonika Jones\, JD\, CNP Founder and Executive Director of the Pediatric Epilepsy Surgery Alliance and mom to Henry who has had multiple brain surgeries. URL:https://deepconnections.net/azb/event/epilepsy-surgery-research-updates-all-you-need-to-know/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2025/03/Epilepsy-Surgery-Research-Updates-and-All-You-Need-to-Know-2.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250206T150000 DTEND;TZID=America/New_York:20250206T163000 DTSTAMP:20250113T183321Z CREATED:20250113T183320Z LAST-MODIFIED:20250113T183321Z UID:7165-1738854000-1738859400@deepconnections.net SUMMARY:Growing Together: Navigating the Life Stage Checklist for Families DESCRIPTION:Join us for an empowering and informative webinar\, Growing Together: Navigating the Life Stage Checklist for Families. This session is designed to support parents and caregivers as they navigate the journey from childhood to adulthood for children with complex medical and developmental needs.We will walk participants through the Transition to Adulthood/Life Stage Checklist step-by-step\, breaking down key milestones and actionable steps across critical life stages. From early intervention to adult services\, this comprehensive guide empowers families to feel confident as they prepare for transitions\, access necessary supports\, and advocate effectively.Then\, a panel of experienced parents will share their journeys. They will provide insights into navigating challenges such as coordinating care for adults with disabilities and addressing gaps in resources and support. Their stories will offer practical advice and encouragement for families facing similar experiences.We will also share tools to help streamline the process\, including PESA’s Educational Transition For Youth With Neurological Conditions Guide and Transition Roadmap for Youth with Neurological Conditions course\, plus other valuable resources to guide families in planning for the future. What You’ll Learn: \n\n\n\n\nHow to use the ​Transition to Adulthood/Life Stage Checklist  to plan and prepare for key transitions.\n\n\n\nInsights and real-life tips from parents who have navigated the transition process.\n\n\n\nPractical tools and resources to support education\, healthcare\, and independent living transitions.\n\n\n\n\nWho Should Attend:This webinar is ideal for parents and caregivers of children with disabilities\, educators\, and advocates seeking clarity and actionable strategies to support young people through life’s stages. \n\n\n\nLet us help you navigate this journey step by step so you can feel empowered and prepared for the road ahead.This webinar is presented in partnership with the Pediatric Epilepsy Surgery Alliance\, DEE-P Connections\, the Rare Epilepsy Network\, and the Angelman Syndrome Foundation. URL:https://deepconnections.net/azb/event/growing-together-navigating-the-life-stage-checklist-for-families/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/01/Transition-Checklist.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250130T170000 DTEND;TZID=America/New_York:20250130T183000 DTSTAMP:20250120T135207Z CREATED:20250120T134221Z LAST-MODIFIED:20250120T135207Z UID:7238-1738256400-1738261800@deepconnections.net SUMMARY:Making sure every inchstone of progress is measured - Update on The Inchstone Project DESCRIPTION:Join us for an update on The Inchstone Project which is working to make sure that there are assessments to measure the inchstones\, not milestones\, of progress our loved ones who are profoundly impacted by rare diseases make. This is important not only for measuring every day progress but also to ensure that as genetic therapies and precision medicines are emerging\, there are tools to show improvements in those severely impacted by disorders. If this progress isn’t able to be captured\, treatments that help with what is most important to patients and caregivers may not get to market. \n\n\n\nOur work is focused on what matters most to families and will touch on the recent DEE Parents Speak survey which heard from nearly 270 families about what their priorities are and what better would look like for their child. (see summary graphic below) URL:https://deepconnections.net/azb/event/making-sure-every-inchstone-of-progress-is-measured-update-on-the-inchstone-project/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2024/09/inch-logo-2.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250128T200000 DTEND;TZID=America/New_York:20250128T213000 DTSTAMP:20250108T190436Z CREATED:20250108T190434Z LAST-MODIFIED:20250108T190436Z UID:7161-1738094400-1738099800@deepconnections.net SUMMARY:DEE-P Chat DESCRIPTION:In this safe and supportive space\, you’ll connect with others who understand the unique challenges of raising a child with a severe rare epilepsies (aka DEEs). Whether you’re navigating hospital stays\, coordinating multiple therapies\, or managing the emotional toll\, this group provides an opportunity to share experiences\, offer and receive advice\, and build a community of mutual support. Together\, we can do this! URL:https://deepconnections.net/azb/event/dee-p-chat-2/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/01/We-believe-together-we-can-do-this.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241203T160000 DTEND;TZID=America/New_York:20241203T170000 DTSTAMP:20241201T212409Z CREATED:20241107T195721Z LAST-MODIFIED:20241201T212409Z UID:7073-1733241600-1733245200@deepconnections.net SUMMARY:CVI: The Parent Perspective DESCRIPTION:We are partnering with CVI NOW & Perkins School for the Blind to bring you a parent panel. We will discuss navigating your child’s CVI diagnosis and all that comes along with it. \n\n\n\n\nRegister Here! URL:https://deepconnections.net/azb/event/cvi-the-parent-perspective/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/11/CVI-Parent-panel.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241202T010000 DTEND;TZID=America/New_York:20241202T013000 DTSTAMP:20241127T033130Z CREATED:20241127T033128Z LAST-MODIFIED:20241127T033130Z UID:7138-1733101200-1733103000@deepconnections.net SUMMARY:DEE-P Fundraising Workshop DESCRIPTION:Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process\, provide campaign tips\, and answer any questions. URL:https://deepconnections.net/azb/event/dee-p-fundraising-workshop-2/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241127T140000 DTEND;TZID=America/New_York:20241127T143000 DTSTAMP:20241127T032831Z CREATED:20241127T032647Z LAST-MODIFIED:20241127T032831Z UID:7136-1732716000-1732717800@deepconnections.net SUMMARY:DEE-P Fundraising Workshop DESCRIPTION:Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process\, provide campaign tips\, and answer any questions. URL:https://deepconnections.net/azb/event/dee-p-fundraising-workshop/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20241111T200000 DTEND;TZID=America/Los_Angeles:20241111T210000 DTSTAMP:20241107T195857Z CREATED:20241030T014515Z LAST-MODIFIED:20241107T195857Z UID:7061-1731355200-1731358800@deepconnections.net SUMMARY:Surviving the Holidays - A DEE-P Chat DESCRIPTION:Join us as we chat about navigating the holidays with our medically complex kids. From finding the perfect gifts\, making memories\, or spending time in the hospital we plan to talk about it ALL. We hope that everyone leaves feeling encouraged and knowing they aren’t allow during this holiday season. \n\n\n\n\nRegister Here! URL:https://deepconnections.net/azb/event/surviving-the-holidays-a-dee-p-chat/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/10/Surviving-the.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241022T150000 DTEND;TZID=America/New_York:20241022T160000 DTSTAMP:20241014T113353Z CREATED:20241014T113352Z LAST-MODIFIED:20241014T113353Z UID:7010-1729609200-1729612800@deepconnections.net SUMMARY:ALL ABOUT The Connected Parent DESCRIPTION:Join us and the founder of The Connected Parent\, Julie Walters. The Connected Parent is like Yelp\, but for families that have kids with disabilities! \n\n\n\n\nRegister Here URL:https://deepconnections.net/azb/event/all-about-the-connected-parent/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/10/TheConnectParent.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240917T110000 DTEND;TZID=America/New_York:20240917T120000 DTSTAMP:20240802T001723Z CREATED:20240802T001536Z LAST-MODIFIED:20240802T001723Z UID:6001-1726570800-1726574400@deepconnections.net SUMMARY:How to Get Grants and Funding for Medical Expenses DESCRIPTION:DEE-P Connections\, in association with DYNC1H1 Association\, is excited to welcome Advocacy Abby\, who will assist families with medically complex children in navigating the complexities of grants and other funding sources. \n\n\n\n\nRegister Here! URL:https://deepconnections.net/azb/event/how-to-get-grants-and-funding-for-medical-expenses/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/08/AskAbbyWeb.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240822T130000 DTEND;TZID=America/New_York:20240822T130000 DTSTAMP:20240727T212251Z CREATED:20240727T212140Z LAST-MODIFIED:20240727T212251Z UID:5977-1724331600-1724331600@deepconnections.net SUMMARY:Sleep & DEEs DESCRIPTION:Join us as we discuss sleep issues within the DEE and rare epilepsies community. \n\n\n\n\nRegister Here! URL:https://deepconnections.net/azb/event/sleep-dees/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/07/sleep-and-Dees.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240614T190000 DTEND;TZID=America/New_York:20240614T203000 DTSTAMP:20240531T010328Z CREATED:20240531T001810Z LAST-MODIFIED:20240531T010328Z UID:5695-1718391600-1718397000@deepconnections.net SUMMARY:Traveling with your medically complex child DESCRIPTION:In this extended discussion\, we will hear from a group of DEE moms about how they manage and plan for adventures and travel with their medically complex children – both nationally and internationally. Hear all about packing\, planning\, meds\, supplies\, special equipment and more. Ask your questions of these seasoned mom travelers and learn their tips and tricks! \n\n\n\nIt’s Friday\, so grab a glass of wine/beer and settle in for this exciting conversation with this amazing group of DEE moms. \n\n\n\n\nRegister here\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nThe outdoors and travel have always been important to our family. Then Tate came along and it felt impossible. On social media I saw other parents doing it and thought why not us? At first\, my goal was just to make it on a weekend staycation. We did that and then stayed longer the next time. Eventually\, we ventured out of state and even took our trach kid to the beach. Now\, I don’t count us out on anything. Yes it takes more time and effort\, but creating those memories together are worth it every time.  \nHeather\, mom to Tate who lives with SCN8A URL:https://deepconnections.net/azb/event/traveling-with-your-medically-complex-child/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/05/traveling-2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20240429T153000 DTEND;TZID=America/Los_Angeles:20240429T160000 DTSTAMP:20240429T143223Z CREATED:20240419T161415Z LAST-MODIFIED:20240429T143223Z UID:5578-1714404600-1714406400@deepconnections.net SUMMARY:Increasing Access to Clinical Trials and New Treatments Across the DEEs DESCRIPTION:Join us for a conversation about a promising model of clinical trials for new epilepsy treatments that accelerate access to the wider community of DEEs. The “basket trial” design is used in clinical trials for medicines aiming to treat symptoms of those living with DEEs\, including seizures. This broad approach is different than the current standard clinical trial design singling out individual disorders\, and would mean increased access to clinical research for families interested in participating. With this more inclusive model\, treatments approved using this method could include DEEs in the “label” (i.e. approved by the FDA for use)\, reducing the need for families to have to argue with doctors and insurance companies for the use of drugs off-label. Join us to learn more about this model in our discussion with Longboard Pharmaceuticals who has applied this model in their innovative Phase 2 trial design that was inclusive of all DEEs. DEE-P Connections is actively advocating with the FDA to be more supportive of pharmaceutical companies about this model and we welcome more families to help speak out about the need to accelerate improved treatments for the dozens of rare epilepsies. \n\n\n\nThis session is being held in partnership with the Rare Epilepsy Network. \n\n\n\n\nRegister Here URL:https://deepconnections.net/azb/event/increasing-access-to-clinical-trials-and-new-treatments-across-the-dees/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240325T180000 DTEND;TZID=America/New_York:20240325T193000 DTSTAMP:20240307T092324Z CREATED:20240307T091019Z LAST-MODIFIED:20240307T092324Z UID:5488-1711389600-1711395000@deepconnections.net SUMMARY:The Inchstone Project Community Update - Spring 2024 DESCRIPTION:Please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our loved ones who are more profoundly impacted by disorders and are consistently left unmeasured. We will share an update on the massive data collected via our recent DEE Parents Speak survey and explain how we are working as a global collaborative to ensure that every inchstone (not milestone) of progress can be tracked and that clinical trials are more inclusive of the full range of disorders. \n\n\n\n\nRegister Here URL:https://deepconnections.net/azb/event/the-inchstone-project-community-update-spring-2024/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/03/new-inchstone-logo.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20240229T130000 DTEND;TZID=America/New_York:20240229T140000 DTSTAMP:20240222T204837Z CREATED:20240222T204700Z LAST-MODIFIED:20240222T204837Z UID:5485-1709211600-1709215200@deepconnections.net SUMMARY:A Gift for Future Generations - Brain Donation: What to Consider and How it Works DESCRIPTION:Register Here\n\n\n\n\nIn this important discussion with rare epilepsy moms who made the decision to donate theirs children’s brain tissue upon death\, we will discuss a number of critical elements about this deeply personal and difficult decision including: \n\n\n\n1. How and why they made the decision to donate2. How to manage family members who don’t understand or agree3. The logistics of donation4. How donation impacts the funeral/celebration of lifeAnd more. \n\n\n\nCome listen and ask. your questions. \n\n\n\nOur guests will be Shelley Oldham\, Angie Weaver and Penny Howard. \n\n\n\nYou can learn more about how brain donation plays a crucial role in advancing scientific research/breakthroughs and understanding neurological conditions in this previous webinar with families and professionals: https://deepconnections.net/2022/06/27/why-brain-tissue-donation-matters/ \n\n\n\nThis webinar is hosted in partnership with FamiilieSCN2A Foundation and Hope for Harper \n\n\n\n\nREGISTER URL:https://deepconnections.net/azb/event/a-gift-for-future-generations-brain-donation-what-to-consider-and-how-it-works/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2024/02/brain-2750453_1280.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20231219T170000 DTEND;TZID=America/New_York:20231219T170000 DTSTAMP:20230903T172040Z CREATED:20230903T172039Z LAST-MODIFIED:20230903T172040Z UID:5234-1703005200-1703005200@deepconnections.net SUMMARY:DEE-P Community Chat DESCRIPTION:REGISTER HERE\n\n\n\n\nJoin us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. \n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/dee-p-community-chat-3/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/09/DEEP-Discussion-Pic-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20231128T170000 DTEND;TZID=America/New_York:20231128T170000 DTSTAMP:20230903T172054Z CREATED:20230903T172052Z LAST-MODIFIED:20230903T172054Z UID:5233-1701190800-1701190800@deepconnections.net SUMMARY:DEE-P Community Chat DESCRIPTION:REGISTER HERE\n\n\n\n\nJoin us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. \n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/dee-p-community-chat-4/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/09/DEEP-Discussion-Pic-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20231116T190000 DTEND;TZID=America/New_York:20231116T200000 DTSTAMP:20231107T110601Z CREATED:20231103T141907Z LAST-MODIFIED:20231107T110601Z UID:5315-1700161200-1700164800@deepconnections.net SUMMARY:DEE-P Discussion: CVI and the DEEs DESCRIPTION:Join us for a conversation with caregivers about cortical visual impairment – diagnosis\, therapies\, adaptations and what life is like with CVI. Our guests will be DEE caregivers of children living with CVI: \n\n\n\nAnne Thompson Heller \n\n\n\nStephanie Kung \n\n\n\nMadeleine Oudin \n\n\n\nRachel Gaddis \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/dee-p-discussion-cvi-and-the-dees/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/11/PXL_20230102_142107546-scaled.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20231108T163000 DTEND;TZID=America/New_York:20231108T173000 DTSTAMP:20231103T172149Z CREATED:20231103T131724Z LAST-MODIFIED:20231103T172149Z UID:5310-1699461000-1699464600@deepconnections.net SUMMARY:Cortical Visual Impairment and the DEEs DESCRIPTION:Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. \n\n\n\nYou’ll hear what CVI is\, what it means for your child\, how to get the right kind of therapy and adapt your home/life. \n\n\n\nOur guests will be rare epilepsy/DEE mom Stephanie Kung and Becky Hommer\, Teacher for the Visually Impaired at Connections Beyond Sight and Sound in Maryland. \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/cortical-visual-impairment-and-the-dees/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2023/11/Screen-Shot-2023-11-03-at-12.14.31-PM.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20231024T170000 DTEND;TZID=America/New_York:20231024T170000 DTSTAMP:20231023T202132Z CREATED:20230903T171825Z LAST-MODIFIED:20231023T202132Z UID:5231-1698166800-1698166800@deepconnections.net SUMMARY:DEE-P Community Chat DESCRIPTION:REGISTER HERE\n\n\n\n\nJoin us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom\, Susan Bourgerie\, a psychologist\, who led our session last week on preventing caregiver burnout and building resilience. During this session\, you can share your experiences\, ask questions and connect with other parents/caregivers about our lives raising children with DEEs/rare epilepsies. \n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/dee-p-community-chat-2/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/09/DEEP-Discussion-Pic-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20231017T170000 DTEND;TZID=America/Los_Angeles:20231017T170000 DTSTAMP:20231008T233959Z CREATED:20230926T075837Z LAST-MODIFIED:20231008T233959Z UID:5240-1697562000-1697562000@deepconnections.net SUMMARY:Preventing Caregiver Burnout: A Workshop on Building Resilience DESCRIPTION:Register Here\n\n\n\n\nPreventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo – STXBP1 mom and Social Worker\, Amelia Seraphia Derr and her mom\, Susan Bourgerie\, a psychologist. \n\n\n\nTheir workshop is based on the belief in our innate capacity to adapt\, recover\, and even thrive despite the effects of trauma\, stress\, and adversity. The Body/Mind/Heart resilience model that will be presented includes\, but goes beyond\, traditional self-care. The tools and resources included are empirically shown to build and maintain our capacity for resilience\, even in the face of the chronic stress and caregiver burnout that are a reality for those caring for medically complex children. \n\n\n\nFollowing this session\, please join us on October 24th at 5pm ET for a community chat where we will continue the discussion with Amelia and Susan in an open format. https://us02web.zoom.us/meeting/register/tZIqfumqrjooHNz4H5zWCiamJ_G6pndKERNE \n\n\n\nThis session is brought to you in partnership with the STXBP1 Foundation. \n\n\n\n\nRegister in Advance Here URL:https://deepconnections.net/azb/event/preventing-caregiver-burnout-a-workshop-on-building-resilience/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/09/fist-7391611_1280.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20231012T120000 DTEND;TZID=America/New_York:20231012T120000 DTSTAMP:20231009T075826Z CREATED:20230905T182630Z LAST-MODIFIED:20231009T075826Z UID:5222-1697112000-1697112000@deepconnections.net SUMMARY:Why EEGs Matter and What They Can Reveal DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nHave you ever wondered about the benefits of EEG readings that our children receive? \n\n\n\nJoin us for an illuminating session with Dr. Jay Pathmanathan\, MD from Beacon Biosignals\, pediatric epileptologist Ingo Helbig from Children’s Hospital of Philadelphia and Leah Schust Myers and Shawn Egan from our partners at FamilieSCN2A Foundation for an EEG 101 and a conversation about the use of cutting-edge artificial intelligence for EEG analysis to help improve the clinical care of our children. \n\n\n\n\n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/illuminating-the-hidden-stories-within-eegs-with-ai/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/09/eeg-pic.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230919T170000 DTEND;TZID=America/New_York:20230919T180000 DTSTAMP:20230903T171842Z CREATED:20230903T171727Z LAST-MODIFIED:20230903T171842Z UID:5228-1695142800-1695146400@deepconnections.net SUMMARY:DEE-P Chat DESCRIPTION:REGISTER HERE\n\n\n\n\nJoin us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. \n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/dee-p-chat/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/09/DEEP-Discussion-Pic-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230913T190000 DTEND;TZID=America/New_York:20230913T200000 DTSTAMP:20230905T135438Z CREATED:20230903T165523Z LAST-MODIFIED:20230905T135438Z UID:5219-1694631600-1694635200@deepconnections.net SUMMARY:DEE-P Discussion - Life with an Undiagnosed DEE DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nCome join us as we discuss the experience of having a child with an undiagnosed rare disorder. We’ll discuss different ways of navigating the experience\, the challenges\, and the benefits of connection and community. \n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/dee-p-discussion-life-with-an-undiagnosed-dee/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2023/08/question-mark-1751308_1280.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20230815T043000 DTEND;TZID=America/Los_Angeles:20230815T173000 DTSTAMP:20230809T172819Z CREATED:20230809T172817Z LAST-MODIFIED:20230809T172819Z UID:5173-1692073800-1692120600@deepconnections.net SUMMARY:IEP Crash Course DESCRIPTION:Register here\n\n\n\n\n\n\nSchool is just around the corner for many. It’s a good time to revisit the world of IEPs \n\n\n\nErin Prosser\, Rare Disease Mom and Certified Master IEP Coach\, will join us to provide a Crash Course on how to prepare\, what to consider\, and what to expect in the process. \n\n\n\nWe hope you can join us! \n\n\n\n\nRegister in advance for the link URL:https://deepconnections.net/azb/event/iep-crash-course/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2023/08/back-to-school-5514983_1280.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230804T113000 DTEND;TZID=America/New_York:20230804T123000 DTSTAMP:20230520T062721Z CREATED:20230401T145254Z LAST-MODIFIED:20230520T062721Z UID:4993-1691148600-1691152200@deepconnections.net SUMMARY:Bone Health for the DEEs DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nJoin us to learn more about the brain – bone connection. \n\n\n\nWe are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health. Those taking ASMs have increased rates of bone loss and other issues that may contribute to an increased risk of fracture. \n\n\n\nSo what can we do? \n\n\n\nCome hear from:Dr Meena Balasubramanian – Senior Clinical Lecturer in Musculoskeletal Genetics at Sheffield Children’s NHS Foundation TrustandDr Paul Arundel – Paediatric Consultant in Metabolic Bone Disease at Sheffield Children’s Hospital \n\n\n\n\n\n\n\n \n\n\nPlease enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form.Questions? *If you would like to submit a question to be answered during this webinar\, please submit it here! Feel free to enter as many questions as you wish.Which Webinar Are You Attending? *EmailIf you would like us to respond to your question directly\, please provide your email.Submit \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/bonehealthforthedees/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2023/04/Screen-Shot-2023-05-20-at-5.20.36-AM-e1691954367182.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20230725T170000 DTEND;TZID=America/Los_Angeles:20230725T180000 DTSTAMP:20230719T234551Z CREATED:20230719T215455Z LAST-MODIFIED:20230719T234551Z UID:5164-1690304400-1690308000@deepconnections.net SUMMARY:DEE-P Community Chat DESCRIPTION:Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. \n\n\n\nThis will be the first of our monthly opportunities to connect via Zoom with other DEE caregivers. Once you register\, you will be able to access any future meetings with the same link. \n\n\n\n \n\n\n\n\nRegister Here URL:https://deepconnections.net/azb/event/dee-p-community-chat/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2023/07/social-media-g57ec17e42_1280.png END:VEVENT END:VCALENDAR