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X-WR-CALDESC:Events for AHCF
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DTSTART;TZID=America/New_York:20260609T153000
DTEND;TZID=America/New_York:20260910T170000
DTSTAMP:20260609T192507Z
CREATED:20260609T192159Z
LAST-MODIFIED:20260609T192507Z
UID:9587-1781019000-1789059600@ahckids.org
SUMMARY:Family Circle is Going on Summer Break!
DESCRIPTION:AHC families and caregivers\, \nFamily Circle will be on summer break from June through August\, and we look forward to gathering again in September! \nWe. Are. Here. \nIf you’re looking for connection\, support\, or resources during the summer months\, please reach out to AHCF’s Family Support Team at heather@ahckids.org. \nWishing you a safe\, relaxing\, and joy-filled summer!
URL:https://ahckids.org/event/family-circle-is-going-on-summer-break/
CATEGORIES:Upcoming Events
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/06/Family-Circle-summer-break-e1781032888852.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:20260618T190000
DTEND;TZID=America/New_York:20260618T203000
DTSTAMP:20260713T132703Z
CREATED:20260601T221515Z
LAST-MODIFIED:20260713T132703Z
UID:9558-1781809200-1781814600@ahckids.org
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” \nView Here – https://www.youtube.com/watch?v=k12e9nL-L48&t=228s \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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260720T080000
DTEND;TZID=America/New_York:20260812T170000
DTSTAMP:20260711T192016Z
CREATED:20260711T192016Z
LAST-MODIFIED:20260711T192016Z
UID:9660-1784534400-1786554000@ahckids.org
SUMMARY:Caregivers Compass Begins Soon - Register Now
DESCRIPTION:Registration is now open for our Caregiver’s Compass\, a free virtual course for parents and caregivers of children with complex health care needs. \nCaregiving often means focusing on everyone else’s needs first. This course gives caregivers time to step back and learn ways to support their own well-being while continuing to care for someone they love. \nCaregiver’s Compass is led by certified counselor Brad Thompson and meets once a week for four weeks. Participants can choose the session time that works best for their schedule. \nGoals of the The Caregiver’s Compass \n\nEquip participants with the tools to recognize and navigate recurring stress and grief with evidence-based strategies they can apply in everyday life.\nStrengthen family and care-team communication to support stronger advocacy and reduce burnout.\nBuild sustainable\, community-rooted caregiving support.\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nAvailable course times: \nMondays at 1:00 p.m. ET\nJuly 20\, July 27\, August 3\, August 10 \nMondays at 8:00 p.m. ET\nJuly 20\, July 27\, August 3\, August 10 \nTuesdays at 1:00 p.m. ET\nJuly 21\, July 28\, August 4\, August 11 \nWednesdays at 9:00 a.m. ET\nJuly 22\, July 29\, August 5\, August 12 \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nThis is a space for caregivers who want support that feels useful\, realistic\, and respectful of what caregiving actually looks like. \nIf you or someone you know could benefit from this opportunity\, we encourage you to register and share it with others in the child neurology community.
URL:https://ahckids.org/event/caregivers-compass-begins-soon-register-now/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260728T190000
DTEND;TZID=America/New_York:20260728T210000
DTSTAMP:20260713T174034Z
CREATED:20260713T172503Z
LAST-MODIFIED:20260713T174034Z
UID:9674-1785265200-1785272400@ahckids.org
SUMMARY:AHCF Webinar: What does your child's genetic test actually mean?
DESCRIPTION:Your Child’s AHC Genetic Results: What They Mean—and Why They Matter \n📅 Tuesday\, July 28\n🕖 7:00 PM EDT https://accountingdepartment.zoom.us/meeting/register/-sVoMJcKSkGgMuvXrLIuAg \nMany individuals with Alternating Hemiplegia of Childhood (AHC) have a change\, or mutation\, in the ATP1A3 gene—but understanding what those results mean can feel overwhelming. \nJoin us for a special webinar with Suzanne D. DeBrosse\, MD\, FACMG\, as she helps families better understand the genetics behind AHC\, what genetic testing can (and can’t) tell us\, and why these results matter for your loved one\, research\, and the future of genetic therapies. Whether you’re newly diagnosed or have been part of the AHC community for years\, this webinar will help make the science behind genetic testing more understandable. \nAbout our speaker\nDr. Suzanne DeBrosse is a clinical geneticist at University Hospitals Cleveland Medical Center and Associate Professor at Case Western Reserve University. Board certified in Pediatrics\, Child Neurology\, and Clinical Genetics\, she has served on the AHCF Medical Advisory Board since 2012 and has spent more than a decade caring for individuals with AHC while advancing research and education in the field. \n 
URL:https://ahckids.org/event/what-does-your-childs-genetic-test-actually-mean/
CATEGORIES:Upcoming Events
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260813T130000
DTEND;TZID=America/New_York:20260813T140000
DTSTAMP:20260713T132136Z
CREATED:20260713T131837Z
LAST-MODIFIED:20260713T132136Z
UID:9658-1786626000-1786629600@ahckids.org
SUMMARY:Protected Tomorrows Parent University - Education: Back to SchoolTips
DESCRIPTION:Description – “School” can mean many things:\n– If your child is young\, what is an IEP?\n– If your child is older\, what can you expect to be available?\n– Are there really appropriate school experiences for your child after high school? \nDate & Time Aug 13\, 2026 12:00 PM Central Time (US and Canada) \nWebinar ID 824 7144 8908 \nParent University Registration
URL:https://ahckids.org/event/protected-tomorrows-parent-university-education-back-to-schooltips/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260924T080000
DTEND;TZID=America/New_York:20260926T170000
DTSTAMP:20260710T145409Z
CREATED:20260115T153305Z
LAST-MODIFIED:20260710T145409Z
UID:8849-1790236800-1790442000@ahckids.org
SUMMARY:14th ATP1A3 Symposium
DESCRIPTION:The 14th International ATP1A3 Symposium\, which brings together researchers\, clinicians\, families and associations from around the world around rare diseases linked to the ATP1A3 gene \, is fast approaching. The French AHC Family Association (AFHA) is honoured and delighted to announce that the 14th ATP1A3 in disease Symposium will take place at the at the Pitié-Salpêtrière Hospital in PARIS\, France. \n Thursday\, September 24\, 2026\, will be dedicated to a major meeting for associations and families affected by ATP1A3-related disorders\, aiming to continue and enhance collaborative efforts among all our groups and families.\n \n🎟️Tickets for the family reunion: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/reunion-internationale-des-familles-ahc \nFriday\, September 25\, and Saturday\, September 26\, 2026\, will bring together leading scientists\, geneticists\, physicians\, professors\, and researchers actively working on the ATP1A3 gene to review current knowledge and present key medical research advancements. \n\n\n🎟️Symposium tickets: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/symposium-atp1a3-paris-2026 \n\nDownload the Welcome letter  by the  2026 Organizing Committee \nThese pathologies\, including alternating hemiplegia (AHC) \, remain largely unknown and require international scientific mobilization\, which is why the symposium was created. \nIt takes place annually and has become a key moment for: \nPresenting research advances 🔬 \nSharing new therapeutic approaches 💊 \nStrengthening international collaborations 🤝 \nGiving a voice to families and associations involved on a daily basis 👩‍👧‍👦 \nWhy is this event so important?\nATP1A3 diseases mainly affect children and cause severe symptoms: hemiplegic seizures\, motor disorders\, cognitive difficulties\, dystonic episodes…\nFor families\, each scientific advance represents a concrete hope. \nThe symposium allows for: \nto advance the understanding of these complex diseases\, \nto accelerate research projects \, \nto encourage the emergence of new therapeutic approaches \, \nto increase the international visibility of these rare diseases. \n📆September 24\, 2026 – Family Reunion \nSeptember 25 & 26 – Symposium \n📍 At the Pitié-Salpêtrière Hospital\, \nEdmond and Lily Safra Auditorium\, Paris \n83 Hospital Boulevard \n75013 Paris – FRANCE \n🎟️Symposium tickets: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/symposium-atp1a3-paris-2026 \n🎟️Tickets for the family reunion: https://www.helloasso.com/associations/association-francaise-de-l-hemiplegie-alternante/evenements/reunion-internationale-des-familles-ahc \n 
URL:https://ahckids.org/event/14th-atp1a3-symposium/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270623T080000
DTEND;TZID=America/New_York:20270626T170000
DTSTAMP:20260718T162240Z
CREATED:20260107T155210Z
LAST-MODIFIED:20260718T162240Z
UID:8893-1813737600-1814029200@ahckids.org
SUMMARY:AHCF Family Meeting 2027 -  Bigger in Texas. Stronger Together.
DESCRIPTION:One year from now\, we’ll be calling this place home. 💜\nWe’re excited to share the host hotel for the 2027 AHC Foundation Family Meeting!\n🏨 Marriott CityPlace at Springwoods Village\n📍 Houston\, Texas\n📅 June 23–26\, 2027\nWelcome to  the AHC Foundation Family Meeting where the AHC community comes together—to learn from leading experts\, help shape the future of AHC research\, build lifelong friendships\, and remind one another that no one walks this journey alone.\nWhether you’re new to the AHC community or have been with us for years\, there’s a place for you here. We can’t wait to welcome you to Houston.\nHotel reservation information will be shared as soon as it’s available. Until then…save the date!\n💜 Big Hearts. Strong Bonds. Together in Texas. 📍 Houston\, Texas | June 2027 \n 
URL:https://ahckids.org/event/ahcf-family-meeting-2027-bigger-in-texas-stronger-together/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/01/Marriott-City-Place-Houston-e1784391744536.jpeg
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