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: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 BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 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: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 BEGIN:VEVENT DTSTART;TZID=America/New_York:20230630T190000 DTEND;TZID=America/New_York:20230630T190000 DTSTAMP:20230605T110040Z CREATED:20230605T110038Z LAST-MODIFIED:20230605T110040Z UID:5093-1688151600-1688151600@deepconnections.net SUMMARY:Rare Caregiving: How to Ask for and Accept Help DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nJoin us for a discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to care for ourselves but that can often seem like a luxury when you are caring for a medically complex child. We will talk about ways that we both struggle with and have learned to care for ourselves and look forward to you sharing your thoughts\, challenges and questions as well. \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/rare-caregiving-how-to-ask-for-and-accept-help/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/06/Help-pic.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230607T130000 DTEND;TZID=America/New_York:20230607T140000 DTSTAMP:20230603T083313Z CREATED:20230520T055112Z LAST-MODIFIED:20230603T083313Z UID:5048-1686142800-1686146400@deepconnections.net SUMMARY:Programs to Help Care for Our Complex Kids - Inpatient and Outpatient DESCRIPTION:Register\n\n\n\n\n\n\n\n\nComplex Care programs are primary care for children with complex chronic medical conditions\, often with multiple diagnoses and dependent on technology (i.e. ventilator)\, tube fed\, etc. This is a medical home for your child with clinicians who understand and work to help manage the complexity of your child’s care. \n\n\n\nAdditionally\, complex care programs – both inpatient and outpatient – work to coordinate the care of your child across the health care spectrum in order to achieve the best possible health. \n\n\n\nOn this webinar\, you will hear from a range of complex care providers and families who use them including: \n\n\n\nFrom Cincinnati Children’s Hospital:Dr. Abby Musial – Medical Director of the Outpatient Complex Care teamAmelia Auberger – Social Work Care Manager\, at the Complex Care CenterScott Callahan – Medical Director of the Inpatient Complex Care Center \n\n\n\nFrom Monroe Carell Jr Children’s Hospital:Christine Cahill – Mom to a child with medical complexity and a member of the Complex Care Family Advisory GroupDr. Katie Freundlich – Director of Family\, Community and Referring Network Engagement for the Program for Children with Medically Complex Needs \n\n\n\n\nREGISTER HERE URL:https://deepconnections.net/azb/event/programs-to-care-for-our-complex-kids/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2023/05/Screen-Shot-2023-05-20-at-4.59.17-AM.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230522T123000 DTEND;TZID=America/New_York:20230522T123000 DTSTAMP:20230520T062812Z CREATED:20230515T104642Z LAST-MODIFIED:20230520T062812Z UID:5032-1684758600-1684758600@deepconnections.net SUMMARY:Protecting Rare Access to Off-Label Treatments DESCRIPTION:REGISTER HERE\n\n\n\n\nHave insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not “medically necessary”? \n\n\n\nIs coverage denied because treatments that may work for you or your child are not on compendia – a compilation of evidence-based\, off-label treatment options? \n\n\n\nNearly half of chemotherapy drugs prescribed today are off-label but there is a broad list of drugs that are covered because there was Congressional action. Join forces with other rare disease patients and other families to learn simple ways YOU can encourage Congressional action to make sure insurers and other payers can no longer deny coverage of needed off-label treatments for rare and ultra-rare disorders. \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/protecting-rare-access-to-off-label-treatments/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2022/02/med-pic.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20230428T120000 DTEND;TZID=America/Los_Angeles:20230428T120000 DTSTAMP:20230414T141234Z CREATED:20230401T150955Z LAST-MODIFIED:20230414T141234Z UID:4996-1682683200-1682683200@deepconnections.net SUMMARY:Learn How to Maximize Your Data with The CRID DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nJoin us for this 30 min webinar to learn more about the Clinical Research ID (aka The CRID™)\, a service that enables patients and parents (and their child/children) involved in clinical research studies the opportunity to create their own unique universal patient identifier to be used in clinical research. This CRID identifier can be used across multiple clinical research studies. It will allow researchers to share your clinical data (not PII/PHI) with other research studies you are involved in. The main benefit is that more of your research data can be shared between researchers and data silos can be eliminated. \n\n\n\nYou’ll hear from the CRID developer\, Gerry Nesbitt\, an informatics innovator specializing in academic clinical research IT. He was previously the Director of Informatics at the University of California\, San Francisco. He was responsible for IT on the Epilepsy Phenome/Genome Project\, a $15M/5 year NIH-funded project and the largest ever epidemiological and genomic study of epilepsy and seizures. \n\n\n\nLearn more at: https://thecrid.org/ \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/criddata/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Los_Angeles:20230418T140000 DTEND;TZID=America/Los_Angeles:20230418T140000 DTSTAMP:20230402T150628Z CREATED:20230402T150550Z LAST-MODIFIED:20230402T150628Z UID:4999-1681826400-1681826400@deepconnections.net SUMMARY:Epilepsies Action Network Advocacy Update DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nLast Fall 2022\, a new consortium – Epilepsies Action Network (EAN) – launched to develop national government relations strategies to increase federal funding for research\, translation\, care\, and cures for the epilepsies. We welcome ALL epilepsies stakeholders who share our vision and mission. Register here to hear their spring updates! \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/epilepsies-action-network-advocacy-update/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230227T170000 DTEND;TZID=America/New_York:20230227T180000 DTSTAMP:20230227T153355Z CREATED:20230130T142745Z LAST-MODIFIED:20230227T153355Z UID:4962-1677517200-1677520800@deepconnections.net SUMMARY:Inchstone Community Update Webinar DESCRIPTION:The tools that are currently being used to measure the progress of people with developmental and epileptic encephalopathies (DEEs) are not able to capture their small improvements\, which could jeopardize trials of new disease-altering treatments. The goal of the Inchstone Project is to identify and develop measures that are sensitive to the small but important changes (inchstones) that many at the severely affected end of the DEE spectrum may have in response to new therapies. Join us at our community update meeting to learn more about our past and upcoming research efforts and to learn how you can get involved! \n\n\n\n\nRegister Here URL:https://deepconnections.net/azb/event/inchstone-community-update-webinar/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2021/12/Inchstone-Logo.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20230213T190000 DTEND;TZID=America/New_York:20230213T190000 DTSTAMP:20230116T162459Z CREATED:20230115T163452Z LAST-MODIFIED:20230116T162459Z UID:4945-1676314800-1676314800@deepconnections.net SUMMARY:Pediatric GI Issues in the DEEs DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nCome hear about GI issues such as reflux\, feeding tubes\, constipation\, and more from pediatric GI doctor and KdVS dad Russ Zwiener. The discussion will be led by Kaci Fisher\, a Koolen-de Vries Syndrome Foundation Board member and KdVS mom. \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/pediatric-gi-issues-in-the-dees/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2023/01/Peds-GI.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20221130T150000 DTEND;TZID=America/New_York:20221130T160000 DTSTAMP:20221122T164910Z CREATED:20221122T164909Z LAST-MODIFIED:20221122T164910Z UID:4836-1669820400-1669824000@deepconnections.net SUMMARY:Epilepsy Surgery and Rare Genetic Disorders DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nCome hear about when and why you should consider epilepsy surgery for your child with a DEE. Our guests will be: \n\n\n\nDr. Ahmad Marashly\, Medical Director\, Pediatric Epilepsy Surgery Program\, Johns Hopkins HospitalandMonika Jones\, JD Founder and Executive Director of the Pediatric Epilepsy Surgery Alliance \n\n\n\nIn this webinar\, you will:– Get an intro to epilepsy surgery for those with genetic epilepsies– Hear about the growing body of literature that supports brain surgery for both palliative and sometimes curative surgery– Learn about the genetic disorders that cause refractory epilepsy\, and better understand ion channel dysfunction/sodium channel mutations/mTOR pathways & surgery \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/epilepsysurgery/ END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20221017T140000 DTEND;TZID=America/New_York:20221017T140000 DTSTAMP:20220924T091159Z CREATED:20220908T183141Z LAST-MODIFIED:20220924T091159Z UID:4631-1666015200-1666015200@deepconnections.net SUMMARY:Keto and the DEEs DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nDo you have questions about the keto diet? \n\n\n\nCome to find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and Pediatric Epileptologist Dr. Chalongchai Phitsanuwong and registered dietician Stephanie Schimpf from the University of Chicago! \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/keto-and-the-dees/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2022/09/Untitled-design-7.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20220916T140000 DTEND;TZID=America/New_York:20220916T150000 DTSTAMP:20220822T154836Z CREATED:20220622T142243Z LAST-MODIFIED:20220822T154836Z UID:4479-1663336800-1663340400@deepconnections.net SUMMARY:Oral Health and Hygiene for Those Who Do Not Eat by Mouth DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nDoes your loved one with a DEE/rare epilepsy struggle with dental issues? \n\n\n\nSwollen gumsExcessive oral secretionsTooth grinding \n\n\n\nJoin us to hear from Dental Hygienist who specializes in working with medically complex children\, researcher and KCNT1 rare epilepsy mom\, Shannon Daly Weir as well as Pediatric Dentist Dr. Hans Reinemer from the University of Utah. \n\n\n\nThis webinar is being planned in partnership with our friends at the KCNT1 Foundation. \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/oral-health-and-hygiene-for-those-who-do-not-eat-by-mouth/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2022/06/oral-health-pic-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20220824T130000 DTEND;TZID=America/New_York:20220824T140000 DTSTAMP:20220817T162901Z CREATED:20220817T004541Z LAST-MODIFIED:20220817T162901Z UID:4612-1661346000-1661349600@deepconnections.net SUMMARY:Back To School SAP DESCRIPTION:REGISTER HERE\n\n\n\n\n \n\n\n\nBack to school time means it’s time to update your child’s seizure action plan (SAP)! Make sure that those who care for your child know how to handle seizure emergencies appropriately and in accordance with your wishes. If it isn’t in the plan\, it can’t be done. \n\n\n\nHear from Dr. Inna Hughes and SCN2A dad\, Shawn Egan about how they work together to regularly update Harper’s care plan to ensure that she is cared for at school as best as possible. \n\n\n\n\n\n\n\nThis webinar was made possible with support from Neurelis. \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/back-to-school-sap/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2022/08/Untitled-design-4.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20220721T150000 DTEND;TZID=America/New_York:20220721T160000 DTSTAMP:20220715T032837Z CREATED:20220407T230010Z LAST-MODIFIED:20220715T032837Z UID:4290-1658415600-1658419200@deepconnections.net SUMMARY:What are we learning about COVID-19 vaccines and infections in those with rare epilepsies? DESCRIPTION:REGISTER\n\n\n\n\n\n\nAre you curious about the safety of COVID-19 vaccines for those under 5 with rare epilepsies? \n\n\n\nAre you unsure about whether to get your child with a rare epilepsy vaccinated against COVID-19? \n\n\n\nJoin us to hear from an incredible panel of experts and get your questions answered. \n\n\n\nAre you willing to share your experiences with COVID-19 vaccines and/or infections pertaining to your child who has a DEE to help us learn about how COVID-19 is impacting the DEE community? If so\, please take 10 minutes to fill out this voluntary survey. \n\n\n\n\n\n\n\nOur guests are: \n\n\n\nAnne Berg\, PhD – Adjunct Professor of Neurology – Epilepsy/Clinical Neurophysiology and COMBINEDBrain \n\n\n\nTina Sosa\, MD\, MSc – Assistant Professor in the Division of Pediatric Hospital Medicine and Associate Chief Quality Officer at Golisano Children’s Hospital in NY \n\n\n\nDaniel Freedman\, D.O – Assistant Professor in the Department of Neurology at Dell Medical School and a board-certified pediatric neurologist in UT Health Austin Pediatric Neurosciences at Dell Children’s in Texa \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/covid19-dees/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2020/06/outbreak-coronavirus-world-1024x506px.jpeg END:VEVENT END:VCALENDAR