BEGIN:VCALENDAR VERSION:2.0 PRODID:-//DEE-P Information Resource Center - ECPv6.17.2//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:DEE-P Information Resource Center X-ORIGINAL-URL:https://deepconnections.net/kir 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: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 BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20270314T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20271107T060000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Los_Angeles 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:20260730T120000 DTEND;TZID=America/New_York:20260730T130000 DTSTAMP:20260714T131355Z CREATED:20260625T163555Z LAST-MODIFIED:20260714T131355Z UID:8115-1785412800-1785416400@deepconnections.net SUMMARY:Blended Diets 101: Benefits\, Basics & Getting Started DESCRIPTION:For many families of tube-fed children\, feeding challenges can feel like an ongoing cycle of managing symptoms\, adjusting formulas\, and searching for solutions. Blenderized tube feeding offers another option that incorporates real food while supporting nutrition\, family mealtimes\, and quality of life. \n\n\n\nJoin DEEP for an educational webinar with Hilarie Geurink\, RD\, a pediatric dietitian specializing in blended tube feeding. Through her online community and the BlendBuddy recipe app\, she helps families use real food to support digestion\, meet nutrition needs\, and create feeding routines that fit real life. \n\n\n\nIn addition to clinical expertise\, this webinar will feature lived experience perspectives from caregivers who have firsthand experience incorporating blenderized tube feeding into their family’s daily routine. Parent panelists will share their personal journeys\, including what inspired them to make the transition\, what the process looked like\, the challenges they faced\, and what they wish they had known when they were getting started. \n\n\n\nDesigned for caregivers of children with feeding tubes\, this beginner-friendly session will walk through the fundamentals of blenderized tube feeding\, including the research behind its growing popularity\, practical steps for getting started\, and common misconceptions that often prevent families from exploring this option. \n\n\n\nYou’ll Learn\n\n\n\n\nWhat blenderized tube feeding is and how it differs from traditional formula feeding\n\n\n\nWhy many families report improvements in digestion\, comfort\, and quality of life\n\n\n\nThe basic equipment needed to begin (and what you likely already own)\n\n\n\nSafe\, simple ways to introduce real food\, including for children who have never eaten by mouth\n\n\n\nHow to gradually incorporate blended meals using homemade blends\, family meals\, or commercial real food formulas\n\n\n\nEvidence-based answers to common concerns about tube clogs\, food safety\, meeting nutrient needs\, and growth\n\n\n\n\nWhether you’re curious about trying a single blended meal each week or considering a more significant transition\, this webinar will provide practical tools\, realistic expectations\, and the confidence to explore blenderized tube feeding alongside your child’s healthcare team. \n\n\n\nFeatured Speakers\n\n\n\nClinician\n\n\n\n\n\n\n\n\nHilarie Geurink\, RD is a pediatric dietitian specializing in blended tube feeding. Through her online community and the BlendBuddy recipe app\, she helps families use real food to support digestion\, meet nutrition needs\, and create feeding routines that work in real life. \n\n\n\n\n\n\n\n\nParent Voices\n\n\n\n\n\n\n\n\nJamie Chong is a former special education teacher and stay-at-home mom to Asher (7)\, Evie (4)\, and Arlo (4 months). After Asher experienced a brain injury at birth that affected his ability to eat by mouth\, Jamie began preparing blended meals for him when he started solids at age one. Over the past several years\, blenderized tube feeding has become a meaningful part of their family’s journey\, and Jamie is passionate about sharing how real food has supported Asher while making mealtimes more inclusive and connected. \n\n\n\n\n\n\n\n\n\n\n\n\n\nMarissa Bishop is mom to Gregory\, a ten-year-old boy who lives with CDKL5 Deficiency Disorder. Knowing her son would likely need a feeding tube\, Marissa began researching blended diets well before his gtube surgery. Gregory has been on a blended diet since he got his gtube at age three. Now with a g/j tube\, Gregory still enjoys a blended diet continuously through his j port. Marissa believes that all people deserve to be fed real food and she is passionate about helping parents advocate for how they want to feed their child. You can learn more about Marissa and life with CDKL5 by tuning in to her podcast\, CDKL5 in Color. \n\n\n\n\n\n\n\n\n\n\n\n\n\nMelanie Kandzierski is the full-time caregiver and mother to her six-year-old daughter\, Rosie\, who has Dravet syndrome and complex medical needs. Melanie is a parent advocate\, content creator\, and Shine Forward With Dravet Parent Ambassador who shares their family’s journey to raise awareness\, support other families\, and advocate for the rare disease and medically complex community. She is passionate about helping families feel empowered with practical information and hopes sharing Rosie’s blended diet journey encourages others exploring nutrition options for their own children. URL:https://deepconnections.net/kir/event/blended-diets-101-benefits-basics-getting-started/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2026/06/Blended-Diets-2-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260630T163000 DTEND;TZID=America/New_York:20260630T173000 DTSTAMP:20260617T205333Z CREATED:20260605T035639Z LAST-MODIFIED:20260617T205333Z UID:8103-1782837000-1782840600@deepconnections.net SUMMARY:Understanding ASOs & Informed Consent DESCRIPTION:Join DEEP and KCNT1 for an educational webinar exploring the fundamentals of ASO therapies and the critical role of informed consent in rare disease care. This session is designed for caregivers\, clinicians\, researchers\, and advocates seeking a clearer understanding of how ASOs work\, where they fit within today’s treatment landscape\, and how families can approach conversations about experimental and individualized therapies. \n\n\n\nIn addition to clinical expertise\, this webinar will feature lived experience perspectives from caregivers who have firsthand experience navigating ASO-related decisions. Parent panelists will share their personal journeys\, including how they learned about ASOs\, the questions they asked\, the challenges they faced\, and what they wish they had known along the way. \n\n\n\nKey Topics\n\n\n\n\nWhat are antisense oligonucleotide (ASO) therapies?\n\n\n\nHow do ASOs work\, and where do they fit in current treatment and research?\n\n\n\nUnderstanding the benefits\, risks\, limitations\, and unknowns of emerging therapies\n\n\n\nWhat informed consent means beyond signing a form\n\n\n\nQuestions families should consider asking when evaluating treatment options\n\n\n\nParent perspectives on navigating ASO-related decisions\n\n\n\nBalancing hope\, uncertainty\, and informed decision-making in rare disease care\n\n\n\n\nSpeakers\n\n\n\nOlivia Kim-McManus\, MDDr. Olivia Kim-McManus is a pediatric neurologist and epileptologist at Rady Children’s Hospital-San Diego and Assistant Professor of Neurosciences at the University of California San Diego. She specializes in rare genetic epilepsies and precision therapeutics\, with a particular focus on developing individualized treatments\, including antisense oligonucleotide (ASO) therapies\, for children with severe neurological disorders. URL:https://deepconnections.net/kir/event/understanding-asos-informed-consent/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2026/06/ASO-Webinar-3.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260520T120000 DTEND;TZID=America/New_York:20260520T130000 DTSTAMP:20260507T165329Z CREATED:20260501T140712Z LAST-MODIFIED:20260507T165329Z UID:8033-1779278400-1779282000@deepconnections.net SUMMARY:Seizure Clusters vs. Status: What Every Caregiver Needs to Know DESCRIPTION:When seizures escalate\, knowing what you’re seeing and how to respond can make all the difference. \n\n\n\nIn this webinar\, we’ll break down the key differences between acute repetitive seizures (seizure clusters) and status epilepticus\, two conditions that are often confused but may require different approaches to care. We’ll walk through how to recognize patterns\, common triggers\, and what current thinking suggests about treatment and management. \n\n\n\nThis conversation will also address a challenge many families face: repeated sedation during hospital visits and the cycle of seizures\, rescue medications\, sleep\, and recurrence. Caregivers will leave with a better understanding of what to watch for and how to advocate for their child in emergency settings. \n\n\n\n✨ In partnership with FamilieSCN2A\, this session brings together expert clinicians and three parent voices sharing lived experience. Together\, we aim to support informed decision making and strengthen caregiver advocacy during critical moments. \n\n\n\n\n\n\n\nFeatured Clinicians\n\n\n\n\n\n\n\nInna Hughes\, MD\, PhDAssociate Professor of Child Neurology and Epilepsy\, University of Rochester \n\n\n\nDr. Hughes is a pediatric neurologist specializing in epilepsy\, with a focus on developmental and epileptic encephalopathies. She serves as Chief of Pediatric Epilepsy and Interim Chief of Child Neurology at the University of Rochester. Her work focuses on improving outcomes for children with epilepsy through research in genetics\, dietary therapies\, and care transitions\, as well as advancing education and community awareness. \n\n\n\n\n\n\n\n\n\n\n\nLaura McGarry\, MD\, PhDPediatric Neurologist\, Children’s Hospital of Philadelphia (CHOP) \n\n\n\nDr. McGarry specializes in epilepsy and neurodevelopmental disorders\, with a focus on genetic conditions such as SCN1A\, SCN2A\, and SCN8A-related disorders. She cares for patients through the Epilepsy NeuroGenetics Initiative (ENGIN) Clinic at CHOP. Her research explores how genetic changes impact brain function and development to improve diagnosis\, treatment\, and outcomes. URL:https://deepconnections.net/kir/event/seizure-clusters-vs-status-what-every-caregiver-needs-to-know/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2026/05/clusters-vs-status.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260409T220000 DTEND;TZID=America/New_York:20260409T230000 DTSTAMP:20260304T164656Z CREATED:20260304T164653Z LAST-MODIFIED:20260304T164656Z UID:8017-1775772000-1775775600@deepconnections.net SUMMARY:West Coast or Night Owl DEE-P Chat DESCRIPTION:Join Shannon and Colleen for our next DEE-P Chat — a relaxed\, connection-centered space for caregivers of children impacted by DEEs. \n\n\n\nWe’ll spend time getting to know one another through brief introductions\, sharing about our children\, and reflecting on our current highs and lows. Sometimes what we need most isn’t another presentation — it’s community. \n\n\n\nA place to be seen\, heard\, and understood by people who truly get it. \n\n\n\nDate: April 9th Time: 8:00 PM Pacific 10:00 PM Central 9:00 PM Mountain 11:00 PM Eastern \n\n\n\nPerfect for our west coast or late night east coast friends! \n\n\n\nThis conversation is caregiver-focused and designed to foster connection\, support\, and shared understanding. Come as you are. URL:https://deepconnections.net/kir/event/west-coast-or-night-owl-dee-p-chat/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2026/03/Copy-of-AugustDEEPChat-4.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260330T180000 DTEND;TZID=America/New_York:20260330T190000 DTSTAMP:20260326T155718Z CREATED:20260304T165121Z LAST-MODIFIED:20260326T155718Z UID:8020-1774893600-1774897200@deepconnections.net SUMMARY:An Evening with Inchstone DESCRIPTION:As new treatments move closer to reality\, we need better tools to measure meaningful change in our children’s development. Join DEE-P Connections and The Inchstone Project to learn about Parents Speak 2 — a caregiver-powered survey helping improve outcome measures. \n\n\n\nYour voice is essential to advancing clinical trial readiness. URL:https://deepconnections.net/kir/event/an-evening-with-inchstone/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2026/03/Inchstone-PSS2-Instagram-Post.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260305T200000 DTEND;TZID=America/New_York:20260305T210000 DTSTAMP:20260304T164000Z CREATED:20260304T163956Z LAST-MODIFIED:20260304T164000Z UID:8013-1772740800-1772744400@deepconnections.net SUMMARY:DEE-P Chat DESCRIPTION:Join Shannon and Anne for our next DEE-P Chat — a relaxed\, connection-centered space for caregivers of children impacted by Developmental and Epileptic Encephalopathies (DEEs). \n\n\n\nThis month\, we’re keeping it simple. There is no formal topic. Instead\, we’ll spend time getting to know one another through brief introductions\, sharing about our children\, and reflecting on our current highs and lows.Sometimes what we need most isn’t another presentation — it’s community. A place to be seen\, heard\, and understood by people who truly get it. \n\n\n\nDate: March 5Time: 8:00 PM Eastern7:00 PM Central6:00 PM Mountain5:00 PM Pacific \n\n\n\nThis conversation is caregiver-focused and designed to foster connection\, support\, and shared understanding. Come as you are. URL:https://deepconnections.net/kir/event/dee-p-chat-3/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2026/03/Copy-of-AugustDEEPChat-3.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20260205T130000 DTEND;TZID=America/New_York:20260205T140000 DTSTAMP:20260116T204815Z CREATED:20260116T204812Z LAST-MODIFIED:20260116T204815Z UID:7945-1770296400-1770300000@deepconnections.net SUMMARY:Pulmonary Decision-Making: Navigating Respiratory Care for Medically Complex Children DESCRIPTION:📅 February 5\, 2026🕛 12:00 PM CT | 1:00 PM ET | 10:00 AM PT💻 Live on Zoom \n\n\n\nPulmonary care decisions can be some of the most complex and emotionally heavy choices families face. \n\n\n\nIn this webinar\, we bring together clinical expertise and lived experience to support caregivers navigating respiratory care for medically complex children. Pediatric pulmonologist Esra Caylan will review common pulmonary challenges\, testing\, and treatment options\, while parent panelists Lindsey Garret and Brittni Evans share real-world insight into how decisions unfold over time. \n\n\n\nThis conversation focuses not just on what options exist\, but how caregivers make informed decisions that align with their family’s values. URL:https://deepconnections.net/kir/event/pulmonary-decision-making/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2026/01/Pulm-Decision-Making.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251212T150000 DTEND;TZID=America/New_York:20251212T160000 DTSTAMP:20251124T191938Z CREATED:20251124T191935Z LAST-MODIFIED:20251124T191938Z UID:7883-1765551600-1765555200@deepconnections.net SUMMARY:Navigating GI Interventions: From Testing to Treatment DESCRIPTION:Join us on December 12 at 3pm CT for a family-centered webinar on GI health in medically complex children. Pediatric gastroenterologist Dr. Sherief Mansi will review feeding and stooling challenges\, common testing\, and clinical options such as tube feeding\, stomas\, and TPN. Two parents with lived experience will also share practical insights from their own journeys. \n\n\n\nThis session is designed to equip caregivers with knowledge\, confidence\, and the right questions to support informed decision-making. \n\n\n\nDr. Sherief Mansi is a board-certified pediatric gastroenterologist at Cook Children’s who specializes in neurogastroenterology and motility. He uses advanced diagnostic tools and a family-centered approach to help children with complex GI needs get the care they deserve. URL:https://deepconnections.net/kir/event/navigating-gi-interventions-from-testing-to-treatment/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/11/GI-Decision-Making.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251117T190000 DTEND;TZID=America/New_York:20251117T203000 DTSTAMP:20251006T134749Z CREATED:20251006T134646Z LAST-MODIFIED:20251006T134749Z UID:7841-1763406000-1763411400@deepconnections.net SUMMARY:Surviving The Holidays - A DEE-P Chat DESCRIPTION:Join us Monday November 17 at 8pm EST as we chat about navigating the holidays with our medically complex kids. We will be sharing gift ideas\, how to create memories\, joining family/friends for gatherings\, and navigating all the big feelings this season brings! URL:https://deepconnections.net/kir/event/surviving-the-holidays-a-dee-p-chat-2/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/10/Surviving-the-2.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251114T120000 DTEND;TZID=America/New_York:20251114T130000 DTSTAMP:20251113T135510Z CREATED:20251113T132240Z LAST-MODIFIED:20251113T135510Z UID:7857-1763121600-1763125200@deepconnections.net SUMMARY:Lightening the Load: How AI Can Support Families Managing Complex Care DESCRIPTION:Caring for a medically complex child means juggling endless details\, from therapy notes and appointments to insurance paperwork and care coordination. Join Jennifer Bloom\, parent\, caregiver\, and advocate\, for a practical and encouraging session on how AI tools can help lighten the mental load. Jennifer will share real examples of how she uses AI to simplify tasks such as organizing medical information\, writing letters to providers and insurance\, and keeping track of care plans. \n\n\n\nYou will leave with inspiration and simple prompt ideas you can start using right away\, along with a clear understanding of what AI can and cannot safely do to make life a little easier. URL:https://deepconnections.net/kir/event/lightening-the-load-how-ai-can-support-families-managing-complex-care/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2025/10/Lightening-the-Load.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250625T110000 DTEND;TZID=America/New_York:20250625T110000 DTSTAMP:20250424T191406Z CREATED:20250424T191404Z LAST-MODIFIED:20250424T191406Z UID:7468-1750849200-1750849200@deepconnections.net SUMMARY:Parent Perspectives: Insights into Medical Decision-Making DESCRIPTION:Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child\, weighing not only risks and benefits but also the goals of care for their child. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. Discover the factors that influenced their choices\, the challenges they faced\, and the lessons they learned along the way. Hear how they worked with their child’s care team and ultimately made their decisions. Don’t miss this opportunity to learn from real-life experiences and gather practical advice to support your own decision-making process. \n\n\n\nThis session will be moderated by Gabrielle Conecker\, who has more than 20 years of experience in advocating for and advancing public health. \n\n\n\nThis event will take place on Wednesday\, June 25th at 12:00 pm ET (11:00 am CT\, 10:00 am MT\, 9:00 am PT). URL:https://deepconnections.net/kir/event/parent-perspectives-insights-into-medical-decision-making/ ATTACH;FMTTYPE=image/jpeg:https://deepconnections.net/wp-content/uploads/2025/04/CP-Paren-Perspectives.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250609T130000 DTEND;TZID=America/New_York:20250609T140000 DTSTAMP:20250609T154018Z CREATED:20250609T153822Z LAST-MODIFIED:20250609T154018Z UID:7519-1749474000-1749477600@deepconnections.net SUMMARY:What’s at Stake for Medicaid—and How Parents Can Take Action DESCRIPTION:Proposed changes to Medicaid could have serious consequences for families of children with medical complexity and disabilities. Join us for a timely and important conversation about what’s being proposed\, what it could mean for your child’s care\, and—most importantly—how you can make your voice heard. \n\n\n\nHear from two seasoned advocates:Laura Weidner\, Chief Advocacy and Government Relations Officer at the Epilepsy FoundationandGabi Conecker\, Co-Founder and Executive Director of Decoding Developmental Epilepsies and DEE-P Connections. \n\n\n\nThey’ll break down the legislation in clear terms\, share how families like yours could be affected\, and offer concrete steps you can take to advocate for your child and community. \n\n\n\nYou don’t need to be a policy expert to make a difference. Come learn\, connect\, and feel empowered to act. URL:https://deepconnections.net/kir/event/whats-at-stake-for-medicaid-and-how-parents-can-take-action/ ATTACH;FMTTYPE=image/png:https://deepconnections.net/wp-content/uploads/2025/06/medicaid-1.png END:VEVENT 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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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/kir/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 END:VCALENDAR