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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/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260816T200000
DTEND;TZID=America/New_York:20260816T200000
DTSTAMP:20260811T164254Z
CREATED:20260730T152920Z
LAST-MODIFIED:20260811T164254Z
UID:8207-1786910400-1786910400@deepconnections.net
SUMMARY:Epileptic Spasms DEEP Chat
DESCRIPTION:Are you a caregiver of someone with epileptic spasms (e.g.\, infantile spasms\, West syndrome\, infantile epileptic spasms syndrome (IESS)\, and epileptic spasms that continue or emerge later in childhood)? \n\n\n\nJoin us for a virtual DEEP Chat created specifically for caregivers and families of children with an epileptic spasms diagnosis. This is a welcoming space to connect with others who understand the journey\, share experiences\, ask questions\, and find encouragement in a supportive community.
URL:https://deepconnections.net/kir/event/epileptic-spasms-deep-chat/
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DTSTART;TZID=America/New_York:20260827T193000
DTEND;TZID=America/New_York:20260827T203000
DTSTAMP:20260625T195954Z
CREATED:20260625T195753Z
LAST-MODIFIED:20260625T195954Z
UID:8129-1787859000-1787862600@deepconnections.net
SUMMARY:A Caregiver's Guide to Seizure Medications
DESCRIPTION:Presented by DEEP in partnership with CDKL5 in Color \n\n\n\nSeizure medications are one of the most common and important tools used in epilepsy care\, yet many families find themselves trying to understand unfamiliar medication names\, treatment plans\, side effects\, and frequent medication changes. Learning how anti-seizure medications work and why they are prescribed can help caregivers feel more confident when making decisions alongside their healthcare team. \n\n\n\nJoin DEEP and CDKL5 in Color for an educational webinar with Heather Nichols\, Neurology PharmD from Children’s Hospital Colorado. This session will provide caregivers with a foundational understanding of anti-seizure medications (ASMs)\, including how they work in the brain\, the major medication classes\, and the many factors clinicians consider when developing an individualized treatment plan. \n\n\n\nIn addition to clinical expertise\, this webinar will feature lived experience perspectives from caregivers who have firsthand experience navigating seizure medication journeys. Parent panelists will share the realities of trialing medications\, balancing seizure control with quality of life\, managing side effects\, and advocating for their child’s unique needs. \n\n\n\nDesigned for caregivers of children living with developmental and epileptic encephalopathies (DEEs) and other complex epilepsies\, this beginner-friendly session will help families better understand the role medications play in epilepsy care and prepare them for more informed conversations with their healthcare team. \n\n\n\nYou’ll Learn\n\n\n\n\nThe major classes of anti-seizure medications (ASMs)\n\n\n\nHow seizure medications work to reduce seizures\n\n\n\nWhy medication selection differs based on seizure type\, epilepsy syndrome\, age\, and other individual factors\n\n\n\nHow clinicians approach medication combinations and treatment adjustments\n\n\n\nCommon side effects\, monitoring\, and medication safety\n\n\n\nTreatment goals beyond seizure reduction\, including quality of life\n\n\n\nQuestions families can ask when discussing medications with their healthcare team\n\n\n\n\nWhether your child is starting their first anti-seizure medication or has tried many different therapies over time\, this webinar will provide practical\, evidence-based information to help you better understand your child’s treatment journey. \n\n\n\nFeatured Speaker\n\n\n\nClinician\n\n\n\nHeather Nichols\, Neurology PharmD is a pediatric neurology pharmacist at Children’s Hospital Colorado. She specializes in anti-seizure medications and works alongside neurology teams to help optimize medication therapy for children with epilepsy. Full bio coming soon. \n\n\n\nParent Voices\n\n\n\nParent panelists to be announced.
URL:https://deepconnections.net/kir/event/a-caregivers-guide-to-seizure-medications/
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DTSTART;TZID=America/New_York:20260910T140000
DTEND;TZID=America/New_York:20260910T150000
DTSTAMP:20260629T150536Z
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UID:8138-1789048800-1789052400@deepconnections.net
SUMMARY:Listening Out Loud: Joyful Communication Beyond Words
DESCRIPTION:Presented by DEEP in partnership with Rare Birds Foundation \n\n\n\nCommunication is about so much more than words. For children living with developmental and epileptic encephalopathies (DEEs) and other conditions that impact speech\, meaningful connection happens through many forms of communication. Learning to recognize and respond to these moments can strengthen relationships\, build confidence\, and create more joyful interactions for the entire family. \n\n\n\nJoin DEEP and Rare Birds Foundation for an engaging webinar featuring Bethany Brown\, SLP\, and Shanna Allman\, a professional therapeutic healthcare clown. Together\, they will introduce the principles of Listening Out Loud\, an approach that combines communication science with the creativity of improvisation to help families and professionals connect more deeply with children who communicate in unique ways. \n\n\n\nDesigned for caregivers\, family members\, educators\, therapists\, healthcare professionals\, and anyone who supports children with complex communication needs\, this session will explore practical\, encouraging strategies that can be incorporated into everyday life. \n\n\n\nYou’ll Learn\n\n\n\n\nHow to recognize communication beyond spoken words\n\n\n\nSimple ways to build meaningful connections through everyday interactions\n\n\n\nHow principles of improvisation can encourage communication\, play\, and engagement\n\n\n\nStrategies for responding to your child’s unique communication style\n\n\n\nWays family members\, educators\, therapists\, and healthcare providers can create more joyful communication experiences\n\n\n\nPractical ideas you can begin using immediately at home\, school\, or in clinical settings\n\n\n\n\nWhether your child communicates through eye gaze\, facial expressions\, gestures\, vocalizations\, AAC\, or other individualized methods\, this webinar will help you see communication through a new lens and leave you with practical tools for building stronger\, more connected relationships. \n\n\n\nFeatured Speakers\n\n\n\nBethany Brown\, SLP\n\n\n\nBio coming soon. \n\n\n\n\n\n\n\n\nShanna Allman\, aka Dr. So-n-So\, is a professional therapeutic healthcare clown with Laughter League\, a national organization that works to bring joy\, laughter\, compassion\, and connection to children’s hospitals and memory care facilities throughout the United States.
URL:https://deepconnections.net/kir/event/listening-out-loud/
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