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DTSTART;TZID=America/New_York:20260618T190000
DTEND;TZID=America/New_York:20260618T203000
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SUMMARY:AHCF Webinar - Dr Mohamad Mikati
DESCRIPTION:“What We’ve Learned from the outcome study of 115 Individuals with AHC: Insights for Families and Future Treatments” \nRegister Here- https://accountingdepartment.zoom.us/meeting/register/DDXOrtUhQj6CrGrqyzjA8A \nThe Natural History Study of AHC which was published recently (https://onlinelibrary.wiley.com/doi/epdf/10.1002/cns3.70037) and was highlighted as the top article of the year in the North American Child Neurology Society\, has major implications for the care of AHC champions and for anticipated clinical trials. This study highlights\, among other things\, many prognostic factors that help chart the clinical course of specific patients\, that can help families know what to expect and thus better care for these champions.  \nExamples include the following:\n1. Better understanding the factors that determine the trajectories of each patient depending on\, not only\, the gene mutation but also on their specific early pattern of development and severity of spells at around the age of one year and on the presence of epilepsy\n2. The amelioration of plegia spells during the period of later childhood through mid-adulthood.\n3. The potential detrimental effects of epilepsy on development and on life threatening events.  \nImplications on the therapies given to AHC champions include tailoring and individualizing the prescribed treatments/anticipatory guidance and being deliberate and proactive in the therapy of epilepsy.   \nFindings from this study will help in planning anticipated therapeutic trials including gene therapies in several ways\, among them to make sure patients who receive such therapies are compared to untreated patients with similar anticipated clinical course trajectories as well as planning the timing of the interventions in these trials. \nMohamad A.  Mikati MD\, FAS\, Davison Professor of Pediatrics\, Professor of Neurobiology\, Duke University who has received multiple awards and is listed by research.com as one of the ranked Best Scholar Neuroscientists nationally and worldwide (> 350 scientific articles\, 55 are about AHC/ATP1A3).  \nHe received his MD at the American University of Beirut then trained in Neurology and Neurophysiology at Harvard.  \nHis basic science and clinical research concentrated on epilepsy and on Alternating Hemiplegia of Childhood (AHC). In AHC\, he was the first to demonstrate\, in 1992\, familial occurrence of AHC\, thus proving that it is a genetic disease.  \nHe also was the first to develop an AHC-USA Registry at Harvard and to report\, in 2000\, based on that registry\, on the totality of AHC manifestations and long-term outcome. Subsequently\, he was one of 2 senior and corresponding authors\, contributed equally\, of the Nature Genetics article that\, in 2012\, demonstrated that AHC is caused by ATP1A3 mutations.\nThen\, in 2015 and 2018\, he generated mouse models of the two most common AHC mutations\, established that they faithfully reflect human AHC manifestations and characterized their neuronal electrophysiology.  \nHe led the team that was the first to demonstrate that gene therapy increases survival and ameliorates several manifestations in AHC mice.  \nHe also established\, at Duke\, the leading center for care and clinical research for patients with AHC in the USA and generated a series of publications (2015-2026) regarding the manifestations and therapies of AHC.  \nHe co-founded\, led and collaborated with other members of the International AHC Consortium (IAHCRC) on clinical studies of AHC including the international natural history study\, in 2025.  \nHe continues to pursue active clinical and basic research aiming at curing AHC.
URL:https://ahckids.org/event/ahcf-webinar-with-dr-mohamed-mikati-understanding-the-natural-history-study-for-patients-families-and-clinical-trials/
CATEGORIES:Upcoming Events,Webinar
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/05/Dr-Mikati2026-scaled-e1780250064602.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260611T130000
DTEND;TZID=America/New_York:20260611T140000
DTSTAMP:20260528T193412Z
CREATED:20260528T192819Z
LAST-MODIFIED:20260528T193412Z
UID:9545-1781182800-1781186400@ahckids.org
SUMMARY:Protected Tomorrows Parent University - ABLE Account Webinar
DESCRIPTION:Protected Tomorrows Parent University is presenting a free webinar on June 11th. Everyone who has an interest in the Special Needs Community is invited. In this important session about ABLE Accounts\, we will cover: \nThe basics of ABLE\nHow ABLE differs by state\nHow to stay out of trouble.\nWhat is the best way to use this funding tool?\nClick Here To Register https://us02web.zoom.us/webinar/register/WN_pcsTjmpJQVeFHVZqQwal5A#/registration
URL:https://ahckids.org/event/protected-tomorrows-parent-university-able-account-webinar/
CATEGORIES:Upcoming Events,Webinar
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/02/Parent-University-e1770137631214.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260514T130000
DTEND;TZID=America/New_York:20260514T140000
DTSTAMP:20260506T195527Z
CREATED:20260506T195527Z
LAST-MODIFIED:20260506T195527Z
UID:9489-1778763600-1778767200@ahckids.org
SUMMARY:2026 Parent University - Vacations and Respite Ideas for the Whole Family
DESCRIPTION:In this exciting session about respite\, we will cover: \nHave you ever thought it is just not possible to have a vacation? Or maybe just some respite?\nHow does that fit into your life?\nWhere can you find resources that match the needs of your family?\nClick Here To Register
URL:https://ahckids.org/event/2026-parent-university-vacations-and-respite-ideas-for-the-whole-family/
CATEGORIES:Upcoming Events,Webinar
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/02/Parent-University-e1770137631214.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260212T130000
DTEND;TZID=America/New_York:20260212T140000
DTSTAMP:20260203T195605Z
CREATED:20260203T195605Z
LAST-MODIFIED:20260203T195605Z
UID:9110-1770901200-1770904800@ahckids.org
SUMMARY:Parent University - Estate Planning
DESCRIPTION:All about estate planning 📄\nJoin Protected Tomorrows’ Parent University Class 2 for an informational session breaking down the different components of estate planning. In this class\, we will discuss:\n➡️ What are the components\n➡️ How to find the right attorney\n➡️ What needs to be updated and when\n📅 February 12\, 2026\n⏰ 12 – 1pm CDT\n💻 Zoom Webinar\n🔗Register TODAY: https://protectedtomorrows.com/…/2026-parent…/\nEven if you cannot attend the webinar\, register to receive an email with a link to watch the recording in the following week.
URL:https://ahckids.org/event/parent-university-estate-planning/
CATEGORIES:Upcoming Events,Webinar
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/02/Parent-University-e1770137631214.jpg
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DTSTART;TZID=America/New_York:20251119T130000
DTEND;TZID=America/New_York:20251119T140000
DTSTAMP:20251110T155245Z
CREATED:20251104T210429Z
LAST-MODIFIED:20251110T155245Z
UID:8738-1763557200-1763560800@ahckids.org
SUMMARY:“AHC and Epilepsy\, Clarity and Confusion”
DESCRIPTION:💜 Join us for a live webinar Wednesday the 19th @ 1:pm EST. Dr. Kevin Ess\, a leading neurologist in Epilepsy and Alternating Hemiplegia of Childhood (AHC) will share insights from the front lines of research and care — what’s next for families and the path to better treatments\, then answer your questions! \nDr. Kevin C. Ess’s research integrates molecular neuroscience\, human stem cell modeling\, and clinical neurogenetics to elucidate mechanisms underlying developmental and epileptic encephalopathies\, with a major focus on Alternating Hemiplegia of Childhood (AHC)\, ATP1A3-related disorders\, and tuberous sclerosis complex (TSC). His laboratory has studied how pathogenic ATP1A3 mutations alter neuronal excitability using patient-derived iPSC models\, contributing pivotal evidence of impaired Na⁺/K⁺-ATPase function and developing translational platforms for therapeutic discovery. \nClinically\, he is a pediatric epileptologist who founded and directs comprehensive rare disease programs\, including the AHC and TSC Clinics at Vanderbilt and Colorado Children’s Hospital\, and serves on the Medical Advisory Board of the AHC Foundation\, linking mechanistic insights to patient care through precision diagnostics and targeted management of neurogenetic disorders. \nRegistration Link
URL:https://ahckids.org/event/ahc-and-epilepsy-clarity-and-confusion/
CATEGORIES:Upcoming Events,Webinar
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DTSTART;TZID=America/New_York:20231014T120000
DTEND;TZID=America/New_York:20231014T133000
DTSTAMP:20231003T200552Z
CREATED:20230927T210526Z
LAST-MODIFIED:20231003T200552Z
UID:6625-1697284800-1697290200@ahckids.org
SUMMARY:Webinar - Grief and Raising Special Needs Children
DESCRIPTION:Brad Thompson will lead what he calls a “guided dialogue” to explore the chronic nature of grief as it relates to families raising children with special healthcare needs. This will include the journey to acceptance of our situation and the challenges to that acceptance. It will also include the importance of finding real meaning in our lives as they are\, which is the key to living in hope.  We will also discuss the challenges to that acceptance and hope. \nWhen: Oct 14\, 2023 12:00 PM Eastern Time (US and Canada) \nRegister in advance for this meeting:\nhttps://zoom.us/meeting/register/tJUqfu-vrz4oG9x7pEFaivqH7Ypv2i6SOKtf \nAfter registering\, you will receive a confirmation email containing information about joining the meeting. \nBrad’s Information\nBrad Thompson\, M.A.\, NCC\, LPC-S \nBrad has been married to Karen for nearly 37 years. They have two adult children – Justin and Hali . Justin is married to Monica (Sisneros) Thompson and they have blessed us with two grandchildren – Ella Grace and Weston Day. Hali deals with the challenges of multiple special needs\, both physical and cognitive\, and is the inspiration for their work. Brad & Karen have been providing marriage retreats for couples who have children with special needs since 2009. \nBrad is the Director of The HALI Project – a non-profit organization that provides counseling and education services for families who have children with special needs and the people who serve them. That work includes working with families\, the education system\, and the medical system. In 2018\, he became the Director of Counseling Services for the Turn Center – a pediatric therapy clinic in Amarillo\, TX that serves over 1\,000 children with special needs and their families across the Texas Panhandle. \nBrad has been blessed with many opportunities to serve in the primary care and special needs communities. Since 2008\, he has worked with and in primary care practices to improve quality of care\, provider efficiency\, family health literacy\, and patient/family satisfaction through the Hali Project’s Parent Partner Program. \nHe served on the Medical Home Advisory Committee for the American Academy of Pediatrics from 2004-2010. From 2011-2015\, he has served on an advisory committee for the Patient Centered Primary Care Collaborative. In 2017\, he was asked to lead the Family Support & Empowerment Program for the Child Neurology Foundation. Brad has served as CNF’s lead trainer for their Caregiver Support project since 2018. \nWhile we would never have chosen for Hali the challenges that she faces every day\, we feel incredibly blessed to share the lessons we have learned over 33 years with her to people across the country.
URL:https://ahckids.org/event/webinar-grief-and-raising-special-needs-children/
CATEGORIES:Webinar
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