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DTSTART;TZID=America/New_York:20260611T130000
DTEND;TZID=America/New_York:20260611T140000
DTSTAMP:20260604T144535
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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DTSTART;TZID=America/New_York:20260618T190000
DTEND;TZID=America/New_York:20260618T203000
DTSTAMP:20260604T144535
CREATED:20260601T221515Z
LAST-MODIFIED:20260602T004609Z
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” \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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DTSTART;TZID=America/New_York:20260924T080000
DTEND;TZID=America/New_York:20260926T170000
DTSTAMP:20260604T144535
CREATED:20260115T153305Z
LAST-MODIFIED:20260202T082055Z
UID:8849-1790236800-1790442000@ahckids.org
SUMMARY:14th ATP1A3 Symposium
DESCRIPTION: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 from Thursday 24th September to Saturday 26th September 2026. \nThursday\, September 24th\, 2026 will be for meeting associations and families concerned by ATP1A3 diseases. \n\nThe scientific meeting will be on Friday 25th and Saturday 26th September.\nDownload the Welcome letter by the  2026 Organising Committee
URL:https://ahckids.org/event/14th-atp1a3-symposium/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/12/14th_symposium_on_atp1a3_in_disease_paris_2026_logo-e1764775968213.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270623T080000
DTEND;TZID=America/New_York:20270626T170000
DTSTAMP:20260604T144535
CREATED:20260107T155210Z
LAST-MODIFIED:20260512T143028Z
UID:8893-1813737600-1814029200@ahckids.org
SUMMARY:AHCF Family Meeting 2027 -  Bigger in Texas. Stronger Together.
DESCRIPTION:Thirty years ago\, The AHC Foundation brought families together because they needed more than support — they needed answers. That gathering became the Family Meeting\, and over three decades it has grown into a full-fledged conference grounded in research\, medicine\, and collaboration. \nAfter our most impactful meeting yet in Cincinnati in 2025\, we’re heading to Houston in June 2027 to continue what the AHC Foundation does best: connecting families\, clinicians\, and researchers to move care forward. \n📍 Houston\, Texas | June 2027\nBig Hearts. Strong Bonds. Together in Texas.
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/Save-the-Date-Houston-e1778596213610.jpg
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