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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/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/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/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/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/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/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/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/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/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/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/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/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/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/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/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/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/event/back-to-school-sap/
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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/event/covid19-dees/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220707T140000
DTEND;TZID=America/New_York:20220707T150000
DTSTAMP:20220629T133851Z
CREATED:20220622T133239Z
LAST-MODIFIED:20220629T133851Z
UID:4475-1657202400-1657206000@deepconnections.net
SUMMARY:Planificación SAP de verano: lo que necesita saber y hacer para estar preparado
DESCRIPTION:Regístrese Aquí\n\n\n\n\n“Planificación SAP de verano: lo que necesita saber y hacer para estar preparado” con Dr. Rebecca Garcia-Sosa En Español! \n\n\n\nCon el verano llegan cambios en la rutina\, nuevos cuidadores y nuevos entornos. Prepárese para emergencias convulsivas en todos los escenarios planificando con anticipación. ¡Venga a escuchar de un neurólogo pediátrico y una familia de epilepsia rara sobre cómo trabajan juntos para desarrollar y actualizar periódicamente los planes de acción para las convulsiones (SAPs) y cómo usted también puede hacerlo! \n\n\n\nEstos webinars están planificados en colaboración con la Coalición del Plan de Acción contra Convulciones\, un lugar para todas sus necesidades y recursos de SAP \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\nRegístrese Aquí\n\n\n\n\n\n\n\n\nHecho posible con el apoyo de Neurelis
URL:https://deepconnections.net/event/planificacion-sap-de-verano-lo-que-necesita-saber-y-hacer-para-estar-preparado/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220629T140000
DTEND;TZID=America/New_York:20220629T150000
DTSTAMP:20220628T223009Z
CREATED:20220622T132109Z
LAST-MODIFIED:20220628T223009Z
UID:4470-1656511200-1656514800@deepconnections.net
SUMMARY:Summer Seizure Action Planning - What you need to know and do to be prepared
DESCRIPTION:REGISTER HERE\n\n\n\n\n\n\n\n\n\n\n“Summer Seizure Action Planning – What you need to know and do to be prepared” with pediatric neurologist\, Dr. Inna Hughes \n\n\n\nWith Summer comes changes in routine\, new caregivers\, and new environments. Be prepared for seizure emergencies in all scenarios by planning ahead. Come hear from a pediatric neurologist and a rare epilepsy family about how they work together to develop and regularly update seizure action plans (SAPs) and how you can too! \n\n\n\nThese webinars are planned in partnership with the Seizure Action Plan Coalition\, a place for all your SAP needs and resources \n\n\n\n\n\n\n\n\nREGISTER HERE\n\n\n\n\n\n\n\n\nMade Possible with support from Neurelis
URL:https://deepconnections.net/event/summer-seizure-action-planning-what-you-need-to-know-and-do-to-be-prepared/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220624T100000
DTEND;TZID=America/New_York:20220624T110000
DTSTAMP:20220622T134746Z
CREATED:20220407T235005Z
LAST-MODIFIED:20220622T134746Z
UID:4294-1656064800-1656068400@deepconnections.net
SUMMARY:Webinar: Why Brain Tissue Donation Matters
DESCRIPTION:REGISTER HERE\n\n\n\n\nThe loss of any loved one with a rare epilepsy is unimaginable. We all wish there were more we could do to help end the suffering that comes with a rare epilepsy diagnosis. In this webinar\, we want to tell you about one incredibly important way families can make a huge impact – brain tissue donation. \n\n\n\nWe will hear from families who have been through this\, a world renowned researcher utilizing these precious donations to make breakthroughs and the director of the Harvard Brain Tissue Resource Center about how this all works. This webinar is being held jointly with our partners at Hope4Harper. \n\n\n\n\n\n\n\n \n\n\n\nOur guests will be: \n\n\n\nPenny Howard – mom to Harper\, who had CDKL5 Deficiency Disorder (CDD) and bravely gave her brain to help study how to help those with CDD who come after her. Penny is also the Founder and Director of the Hope 4 Harper\, a non-profit working to provide hope to those living with CDD and other related diseases. \n\n\n\nAngie  Weaver – Angie is Director of a nonprofit in Northern Minnesota\, a passionate advocate and Warrior Mom to Amelia\, who had SCN2A and passed away at age 12. Angie and her family made the brave decision to donate Amelia’s organs and tissue\, so even now Amelia is fighting on for a cure.  \n\n\n\nFrances Elizabeth Jensen\, MD\, FACP – among many other things\, is the Chair of the Department of Neurology at the Perelman School of Medicine\, University of Pennsylvania and  Co-Director of the Penn Medicine Translational Neuroscience Center. Dr. Jensen has researched the brain extensively and uses donated brain tissue to make breakthroughs in our understanding of disease and potential pathways to better treatments. \n\n\n\nSabina Berretta\, M.D. – Associate Professor of Psychiatry\, Harvard Medical School and Director of the Harvard Brain Tissue Resource Center/NIH NeuroBioBank who not only runs an NIH brain donation center but has spent many years studying the brain with donated tissue. \n\n\n\n\nREGISTER HERE\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
URL:https://deepconnections.net/event/brain-donation/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220614T040000
DTEND;TZID=America/New_York:20220614T170000
DTSTAMP:20220613T183100Z
CREATED:20220526T002920Z
LAST-MODIFIED:20220613T183100Z
UID:4370-1655179200-1655226000@deepconnections.net
SUMMARY:CURE Epilepsy Webinar - Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
DESCRIPTION:In partnership with DEE-P Connections and Partners Against Mortality in Epilepsy (PAME) \n\n\n\n \n\n\n\n\n\n\nREGISTER\n\n\n\n\nSudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1\,000 people with epilepsy\, regardless of age 1\,2. While lack of seizure control and seizure severity are the most common concerns for increased risk of SUDEP\, there is also a concern that certain genetic mutations may increase SUDEP risk.    \n\n\n\n\n\n\n\nThis webinar will discuss what we know about SUDEP\, specifically in the rare epilepsy community\, as well as what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. Presenters will share ideas on how to discuss SUDEP with doctors\, from both the perspective of a physician and a parent of a child diagnosed with a rare genetic epilepsy who has educated themselves about SUDEP and taken steps to reduce the risk of SUDEP for their child. Attendees will have the opportunity to ask questions to all presenters. The webinar will also include a discussion about the latest advancements in basic and clinical epilepsy research focused on SUDEP risk and prevention.   \n\n\n\nThere will be a live Q&A at the end of the presentation. You can submit questions in advance here. \n\n\n\nThe professional speaker for this webinar will be Dr. Sam Lhatoo – a neurologist and neurophysiologist with expertise in the medical and surgical management of intractable epilepsy. He has been a director for top-level epilepsy centers in the UK and USA since 2006 and an instructor for the International Stereo EEG course since its inception in 2010. Dr. Lhatoo serves as the head of the International League Against Epilepsy’s Task Force for Big Data in Epilepsy. He has a particular interest in the epidemiology\, phenomenology\, and pathogenesis of SUDEP and his published work has described potential biomarkers of SUDEP. \n\n\n\n\nREGISTER\n\n\n\n\n \n\n\n\n1 Sveinsson O\, Andersson T\, Carlsson S\, Tomson T. The incidence of SUDEP: A nationwide population-based cohort study. Neurology. 2017 Jul11;89(2):170-177. \n\n\n\n2 Keller AE\, Whitney R\, Li SA\, Pollanen MS\, Donner EJ. Incidence of sudden unexpected death in epilepsy in children is similar to adults. Neurology. 2018 Jul 10;91(2):e107-e111.
URL:https://deepconnections.net/event/sudep-research/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220518T130000
DTEND;TZID=America/New_York:20220518T143000
DTSTAMP:20220513T151020Z
CREATED:20220330T185459Z
LAST-MODIFIED:20220513T151020Z
UID:4244-1652878800-1652884200@deepconnections.net
SUMMARY:Growth Attenuation Therapy - Everything you want and need to know
DESCRIPTION:Register\n\n\n\n\nJoin us to learn more about growth attenuation therapy (GAT) – an intervention to bring on early puberty in order to reduce the ultimate growth of a child. Since 2006\, this treatment has been utilized to help caregivers continue to care for non-ambulatory children with severe physical and cognitive delays in their own homes. Those who chose this route often report an improved quality of life that allows them to carry\, cuddle\, change\, bathe\, and travel with their highly dependent children. During this webinar\, you will: \n\n\n\nLearn what GAT is and how it works.\n\n\n\nHear from families who have been or are going through GAT with their children. \n\n\n\nEthical and practical considerations of GAT. Get your questions answered!\n\n\n\nOur professional experts will be: \n\n\n\nPhil Zeitler is the Medical Director\, Children’s Hospital Colorado Clinical & Translational Research Center Section Head\, Endocrinology. He has been a critical leader in ensuring accessibility to GAT by openly sharing his protocols and advising families/clinicians and is conducting research on GAT.  \n\n\n\nBenjamin Wilfond is Professor\, Divisions of Bioethics and Palliative Care and Pulmonary and Sleep Medicine\, Department of Pediatrics; Adjunct Professor\, Department of Bioethics and Humanities\, University of Washington School of Medicine. He co-authored this paper which was the result of a  twenty-person working group convened to discuss the ethical and policy considerations of GAT. \n\n\n\n\n\n\nRegister here!
URL:https://deepconnections.net/event/growth-attenuation-therapy-webinar/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220513T120000
DTEND;TZID=America/New_York:20220513T130000
DTSTAMP:20220329T125622Z
CREATED:20220202T024834Z
LAST-MODIFIED:20220329T125622Z
UID:4147-1652443200-1652446800@deepconnections.net
SUMMARY:Webinar: High-tech solutions for children with complex communication needs
DESCRIPTION:This webinar\, put on in conjunction with the CACNA1A Foundation\, is the fifth in our series on Optimizing Therapies for those with DEEs\, and will focus on the use of high-tech AAC solutions for communication and access to the home environment.  We will look at options available for being able to access different toys\, home environmental controls\, and using more sophisticated types of communication for the non-verbal or unintelligible child. \n\n\n\nPresenter: Amanda Luddeke MS SLP CCC \n\n\n\nFor more events\, see our event calendar!
URL:https://deepconnections.net/event/webinar-high-tech-solutions-for-children-with-complex-communication-needs/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220408T120000
DTEND;TZID=America/New_York:20220408T130000
DTSTAMP:20220329T130024Z
CREATED:20220202T023512Z
LAST-MODIFIED:20220329T130024Z
UID:4141-1649419200-1649422800@deepconnections.net
SUMMARY:Webinar: Low-Tech Solutions for Children with Complex Communication Needs
DESCRIPTION:This webinar\, put on in conjunction with the CACNA1A Foundation\, is the fourth in our series on Optimizing Therapies for those with DEEs\, and will focus on how to read and interpret your child’s behaviors as communication within the home. In addition\, we will spend time discussing how to shape those behaviors into meaningful forms of communication within the home that others can interpret as well. This workshop will focus on low-tech communication options and solutions for when you are trying to help your child develop a meaningful form of communication and you have limited access to more sophisticated and high-tech forms of communication. \n\n\n\nPresenter: Amanda Luddeke MS SLP CCC \n\n\n\nFor more events\, see our event calendar!
URL:https://deepconnections.net/event/webinar-low-tech-solutions-for-children-with-complex-communication-needs/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220310T110000
DTEND;TZID=America/New_York:20220310T110000
DTSTAMP:20220114T221742Z
CREATED:20220114T212454Z
LAST-MODIFIED:20220114T221742Z
UID:4070-1646910000-1646910000@deepconnections.net
SUMMARY:Webinar: Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays
DESCRIPTION:This webinar\, put on in conjunction with the CACNA1A Foundation\, is the third in our series on Optimizing Therapies for those with DEEs\, will focus on the more severely affected children and how adaptive equipment and therapy techniques such as positioning can greatly impact their ability to function in daily routines. We will look at preventing ongoing deformities\, how to get your equipment covered/funded\, and resources. We will also explore the importance of a strong Letter of Medical Necessity and a good DME (Durable Medical Equipment provider). \n\n\n\nFor more events\, see our event calendar!
URL:https://deepconnections.net/event/adaptive-equipment-and-therapy-strategies-webinar/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220210T110000
DTEND;TZID=America/New_York:20220210T110000
DTSTAMP:20220115T210059Z
CREATED:20220114T205231Z
LAST-MODIFIED:20220115T210059Z
UID:4065-1644490800-1644490800@deepconnections.net
SUMMARY:Webinar: Unraveling the Mysteries of Ataxia\, Hypertonicity\, Athetosis\, and Mixed Tone
DESCRIPTION:This webinar\, put on in conjunction with the CACNA1A Foundation\, is the second in our series on Optimizing Therapies for those with DEEs\, will help caregivers understand the movement patterns of ataxia\, hypertonicity\, athetosis\, and mixed tone\, and how they impact overall development. Treatments/strategies will be identified to help parents with practical everyday interventions. In addition\, we will discuss the needs of children with complex motor impairments. \n\n\n\nFor more events\, see our event calendar!
URL:https://deepconnections.net/event/unraveling-the-mysteries-of-ataxia-webinar/
ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2022/01/ataxia-event.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20220113T110000
DTEND;TZID=America/Los_Angeles:20220113T110000
DTSTAMP:20220119T184808Z
CREATED:20220119T184808Z
LAST-MODIFIED:20220119T184808Z
UID:4094-1642071600-1642071600@deepconnections.net
SUMMARY:Webinar: Impacts of Hypotonia on Overall Development
DESCRIPTION:This webinar\, put on in conjunction with the CACNA1A Foundation\, is the first in our series on Optimizing Therapies for those with DEEs and will help parents/caregivers understand the impact of hypotonia and its effects on all systems of the body. We will discuss health-related issues of children and adults with hypotonia and parents will gain an understanding of how hypotonia impacts the quality of movement and motor development. We will explore potential strategies for optimizing function and maximizing outcomes including how to embed therapy into your daily routines. \n\n\n\nFor more events\, see our event calendar!
URL:https://deepconnections.net/event/webinar-impacts-of-hypotonia-on-overall-development/
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