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DTSTART;VALUE=DATE:20251102
DTEND;VALUE=DATE:20260101
DTSTAMP:20260421T005858
CREATED:20251102T155254Z
LAST-MODIFIED:20251203T161944Z
UID:8837-1762041600-1767225599@ahckids.org
SUMMARY:Season of Giving - Help Ignite the Start of  AHC Research Projects in 2026
DESCRIPTION:Our year-end campaign is here — a season of hope\, movement\, and possibility for every individual living with Alternating Hemiplegia of Childhood. \nYou Can Help Light the Path in Three ways: \n\nSend a letter to family members\, friends\, colleagues\, or school/church members – asking for help in lighting the path – then ask them to share with their families and friends. Here are three template letters to use:\n\nLong version – tell your families story\nMedium version – great for personal emails and social posts\nShort version – perfect for text messages and quick emails\n\n\nJoin the “Light the Path” social media Giving campaign and then please share with your network https://www.facebook.com/AHCKids\nDonate yourself to help keep the momentum and exciting progress going https://ahckids.app.neoncrm.com/forms/ahcf-donation-form   Or mail a check to AHCF\, 2000 Town Center\, Suite 1900\, Southfield\, Mi 48075\n\nDear Friend of the AHC Foundation\, \nAs 2025 draws to a close\, we reflect on the incredible progress made during our 30th anniversary year—and the many families who continue to face the daily challenges of Alternating Hemiplegia of Childhood (AHC). Every step forward in research brings renewed hope for better treatments\, improved quality of life\, and\, ultimately\, a cure. \nBut hope needs fuel. It needs people like you. \nThis holiday season\, we invite you to join us in a powerful movement to Light the Path for AHC Research in 2026. Your year-end gift will illuminate the road ahead for groundbreaking studies\, innovative collaborations\, and the accelerating search for answers that every AHC family deserves. Three of the projects needing funding in 2026 are: \nDuke Univ.\, Phase 3 Gene Therapy project for D801N & E815K mutations.\nLeiden Univ.\, 5-year joint international study on sleep and Flunarizine.\nNIH Project – Using an AHC mouse model\, establish the impact of the D801N variant on the brain and cell survival \nTogether\, we can turn scientific potential into real progress. Together\, we can bring light to those navigating the uncertainty of this rare disorder. \nWe are reaching out to ask for your support in raising funds for the AHC Foundation\, an organization dedicated to advancing research\, improving treatments\, and providing hope for families like ours. Every donation\, no matter the amount\, helps fund scientific studies\, medical care advancements\, and community resources that bring us closer to finding better therapies—and\, one day\, a cure. \nPlease make your tax-deductible contribution before December 31 to help us start 2026 with strength\, momentum\, and determination. \nFrom all of us at the AHC Foundation\, thank you for being the light that guides our mission forward. We wish you peace\, health\, and joy in the year ahead. \nWith deep gratitude\, \nVictoria Platt \nPresident \nAHC Foundation
URL:https://ahckids.org/event/season-of-giving-help-ignite-the-start-of-ahc-research-projects-in-2026/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/12/LTP32-e1764776554398.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251104
DTEND;VALUE=DATE:20260101
DTSTAMP:20260421T005858
CREATED:20251104T210826Z
LAST-MODIFIED:20251202T155412Z
UID:8828-1762214400-1767225599@ahckids.org
SUMMARY:Light the Path for AHC Research in 2026!
DESCRIPTION:Dear Friend of the AHC Foundation\, \nAs 2025 draws to a close\, we reflect on the incredible progress made during our 30th anniversary year—and the many families who continue to face the daily challenges of Alternating Hemiplegia of Childhood (AHC). Every step forward in research brings renewed hope for better treatments\, improved quality of life\, and\, ultimately\, a cure. \nBut hope needs fuel. It needs people like you.   Donate Here \nThis holiday season\, we invite you to join us in a powerful movement to Light the Path for AHC Research in 2026. Your year-end gift will illuminate the road ahead for groundbreaking studies\, innovative collaborations\, and the accelerating search for answers that every AHC family deserves. Three of the projects needing funding in 2026 are: \n\nDuke Univ.\, Phase 3 Gene Therapy project for D801N & E815K mutations.\nLeiden Univ.\, 5-year joint international study on sleep and Flunarizine.\nNIH Project – Using an AHC mouse model\, establish the impact of the D801N variant on the brain and cell survival\n\nTogether\, we can turn scientific potential into real progress. Together\, we can bring light to those navigating the uncertainty of this rare disorder. \nWe are reaching out to ask for your support in raising funds for the AHC Foundation\, an organization dedicated to advancing research\, improving treatments\, and providing hope for families like ours. Every donation\, no matter the amount\, helps fund scientific studies\, medical care advancements\, and community resources that bring us closer to finding better therapies—and\, one day\, a cure. \nPlease make your tax-deductible contribution before December 31 to help us start 2026 with strength\, momentum\, and determination. Checks can be mailed to our above address\, or online donations can be made at www.ahckids.org. \n From all of us at the AHC Foundation\, thank you for being the light that guides our mission forward. We wish you peace\, health\, and joy in the year ahead. \nWith deep gratitude\, \nVictoria Platt \nPresident \nAHC Foundation \n  \n 
URL:https://ahckids.org/event/light-the-path-for-ahc-research-in-2026/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/11/lantern-Picture1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251106T080000
DTEND;TZID=America/New_York:20251221T170000
DTSTAMP:20260421T005858
CREATED:20251116T183832Z
LAST-MODIFIED:20251116T183832Z
UID:8798-1762416000-1766336400@ahckids.org
SUMMARY:Hands of Hope for AHC - Add Your Photo
DESCRIPTION:It starts with our hands — and our hearts. \n\n\nFor the first time\, The AHC Foundation\, Cure AHC\, and AHC Europe are joining together in one global movement — Hands of Hope — to show the world what hope looks like when we hold it together. \n\n\n\n Now\, it’s your turn:\n\n\nWhat hands uplift you and your family on your AHC journey?\n\n\nThe hands that comfort\, that create\, that heal\, that bring joy.\n\n\n\n Take a photo of those hands in action — siblings\, parents\, friends\, doctors\, teachers\, therapists\, researchers — anyone who makes a difference.\n\n\nThen\, click the link below to upload your photo\, share who they are\, what they do\, and why it matters.\n\n\nhttps://forms.gle/ECZE17YLmjomXmpH8\n\n\n\nEvery submission will be shared across our social media channels — together creating a global mosaic of love\, strength\, and hope.\n\n\nBuilt by our community\, for our community.\n\n\nTogether\, we hold the future. \n\n\n\n#HandsOfHope #TogetherWeHoldTheFuture #AHCCommunity
URL:https://ahckids.org/event/hands-of-hope-for-ahc-add-your-photo/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/11/Hands-of-Hope.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251112T130000
DTEND;TZID=America/New_York:20251112T140000
DTSTAMP:20260421T005858
CREATED:20251023T163425Z
LAST-MODIFIED:20251107T141804Z
UID:8701-1762952400-1762956000@ahckids.org
SUMMARY:AHCF Family Circle
DESCRIPTION:You’re Invited! \nJoin us for our next AHCF Family Circle on Wednesday\, November 12th at 10am PST/ 12pm CST/ 1pm EST. \nThis is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey! \nIf you have questions\, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you. \nJoin Zoom Meeting: https://us02web.zoom.us/j/85227963024 \nNeed a Reminder? \nSign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily
URL:https://ahckids.org/event/8701/
ATTACH;FMTTYPE=image/png:https://ahckids.org/wp-content/uploads/2025/10/AHC-Family-Circle-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251119T130000
DTEND;TZID=America/New_York:20251119T140000
DTSTAMP:20260421T005858
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251210T130000
DTEND;TZID=America/New_York:20251210T140000
DTSTAMP:20260421T005858
CREATED:20251118T180217Z
LAST-MODIFIED:20251118T180217Z
UID:8820-1765371600-1765375200@ahckids.org
SUMMARY:AHCF Family Circle - You're Invited!
DESCRIPTION:Join us for our next AHCF Family Circle on Wednesday\, December 10th at 10am PST/ 12pm CST/ 1pm EST. \nThis is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey! \nIf you have questions\, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you. \nJoin Zoom Meeting: https://us02web.zoom.us/j/85227963024 \nNeed a Reminder? \nSign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily
URL:https://ahckids.org/event/ahcf-family-circle-youre-invited/
CATEGORIES:Upcoming Events
ATTACH;FMTTYPE=image/png:https://ahckids.org/wp-content/uploads/2025/10/AHC-Family-Circle-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260113T080000
DTEND;TZID=America/New_York:20260130T170000
DTSTAMP:20260421T005858
CREATED:20260113T104522Z
LAST-MODIFIED:20260113T104522Z
UID:9046-1768291200-1769792400@ahckids.org
SUMMARY:AHC Valentine’s Day Card Exchange
DESCRIPTION:Hello AHC families! It’s time for the AHC Valentine’s Day card exchange. This tradition began as a way to keep our children connected between family meetings\, back before social media. Everyone is welcome to join\, regardless of age! Each participant sends a card to all others—some choose photo cards\, handmade creations\, stickers\, or drawings and coloring. To join\, email your child’s name\, address\, and age to heather@ahckids.org by January 30th. A list of all participating will be emailed out to you by February 2nd.
URL:https://ahckids.org/event/ahc-valentines-day-card-exchange/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/01/heart-love-rectangle-valentine-s-day-2432301-e1768301096574.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260114T130000
DTEND;TZID=America/New_York:20260114T140000
DTSTAMP:20260421T005858
CREATED:20260105T204737Z
LAST-MODIFIED:20260105T204849Z
UID:8887-1768395600-1768399200@ahckids.org
SUMMARY:AHCF Family Circle - You're Invited - 1/14/26
DESCRIPTION:Join us for our next AHCF Family Circle on Wednesday\, January  14th at 10am PST/ 12pm CST/ 1pm EST. \nThis is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey! \nIf you have questions\, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you. \nJoin Zoom Meeting: https://us02web.zoom.us/j/85227963024 \nNeed a Reminder? \nSign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/ahcfamily
URL:https://ahckids.org/event/ahcf-family-circle-youre-invited-1-14-26/
CATEGORIES:Upcoming Events
ATTACH;FMTTYPE=image/png:https://ahckids.org/wp-content/uploads/2025/10/AHC-Family-Circle-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260202T120000
DTEND;TZID=America/New_York:20260223T000000
DTSTAMP:20260421T005858
CREATED:20260202T151328Z
LAST-MODIFIED:20260202T153054Z
UID:9060-1770033600-1771804800@ahckids.org
SUMMARY:AHCF Apparel Pop-Up Store is Open!
DESCRIPTION:You asked—and we’re excited to say it’s back 💙 \nOur apparel store is officially OPEN as a limited-time pop-up\, launched to honor the meaningful days between International AHC Day and Rare Disease Day. \nThis collection is more than apparel. It’s about visibility\, connection\, and proudly supporting the AHC community. Many of these designs are fan favorites\, brought back by popular demand\, and available now through February 23. \nWhether you’re wearing your support\, sparking conversations\, or standing with rare families everywhere—every purchase helps make an impact. \n🛍️ Shop the pop-up before it closes on February 23 \n💙 Wear your support for rare \n✨ Celebrate awareness\, together \n\n\n\nShop here:\n\n\n\nhttps://ahcf2026.itemorder.com/shop/home/
URL:https://ahckids.org/event/ahcf-apparel-pop-up-store-is-open/
CATEGORIES:Upcoming Events
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/02/Monday_Apparel-Store-Launch-Graphic-11-e1770019838892.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260212T130000
DTEND;TZID=America/New_York:20260212T140000
DTSTAMP:20260421T005858
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260225T180000
DTEND;TZID=America/New_York:20260225T190000
DTSTAMP:20260421T005858
CREATED:20260211T161658Z
LAST-MODIFIED:20260218T185827Z
UID:9224-1772042400-1772046000@ahckids.org
SUMMARY:🫀 Heart 2 Heart Webinar: Cardiac Care & AHC
DESCRIPTION:🫀Join AHCF for a heart-to-heart conversation with Dr. Andrew Landstrom\, focused on the unique cardiac concerns faced by individuals living with Alternating Hemiplegia of Childhood. \n\n\n\nWednesday\, February 25 @ 6:00 PM EST \nPlease click the link below to register for the event:\nhttps://tinyurl.com/5863hv3z\nRegistration is required. All registrants will receive a confirmation email with the Zoom link.\n\nThis accessible webinar is designed for patients\, families\, and caregivers seeking clear\, practical guidance and trusted insight. \nDuring this webinar\, participants will:\nLearn about common cardiac concerns associated with AHC\nGain insight into cardiac evaluations and ongoing monitoring\nBetter understand what symptoms to watch for and what questions to ask\nParticipate in a live Q&A with Dr. Landstrom \n\n\n\n\nDr. Andrew Landstrom — a member of the 𝗔𝗛𝗖𝗙 𝗠𝗲𝗱𝗶𝗰𝗮𝗹 𝗔𝗱𝘃𝗶𝘀𝗼𝗿𝘆 𝗕𝗼𝗮𝗿𝗱— has been appointed 𝗜𝗻𝗮𝘂𝗴𝘂𝗿𝗮𝗹 𝗗𝗶𝗿𝗲𝗰𝘁𝗼𝗿 𝗼𝗳 𝗧𝗿𝗮𝗻𝘀𝗹𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 at 𝗖𝗵𝗶𝗹𝗱𝗿𝗲𝗻’𝘀 𝗛𝗼𝘀𝗽𝗶𝘁𝗮𝗹 𝗼𝗳 𝗣𝗵𝗶𝗹𝗮𝗱𝗲𝗹𝗽𝗵𝗶𝗮 (𝗖𝗛𝗢𝗣)’𝘀 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗜𝗻𝘀𝘁𝗶𝘁𝘂𝘁𝗲\, where he is launching a new Center for Heritable Arrhythmias. \nThis new role reflects his continued commitment to advancing care for individuals with genetic arrhythmia syndromes\, including those impacted by 𝗔𝗛𝗖 𝗮𝗻𝗱 𝗔𝗧𝗣𝟭𝗔𝟯 𝘃𝗮𝗿𝗶𝗮𝗻𝘁𝘀.
URL:https://ahckids.org/event/%f0%9f%ab%80-heart-2-heart-webinar-cardiac-care-ahc/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/02/Dr.-Andrew-Landstrom.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260311T130000
DTEND;TZID=America/New_York:20260311T140000
DTSTAMP:20260421T005858
CREATED:20260401T040011Z
LAST-MODIFIED:20260319T185225Z
UID:9057-1773234000-1773237600@ahckids.org
SUMMARY:AHCF Family Circle - You're Invited - 3/11/26
DESCRIPTION:Join us for our next AHCF Family Circle on Wednesday\, March 11th at 10am PST/ 12pm CST/ 1pm EST. \nThis is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey! \nIf you have questions\, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you. \nJoin Zoom Meeting: https://us02web.zoom.us/j/85227963024 \nNeed a Reminder? \nSign up for text message reminders for AHC Family Circle at: https://www.remind.com/join/familyahc
URL:https://ahckids.org/event/ahcf-family-circle-youre-invited-21126-copy/
CATEGORIES:Upcoming Events
ATTACH;FMTTYPE=image/png:https://ahckids.org/wp-content/uploads/2025/10/AHC-Family-Circle-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260312T120000
DTEND;TZID=America/New_York:20260312T130000
DTSTAMP:20260421T005858
CREATED:20260306T145201Z
LAST-MODIFIED:20260306T145258Z
UID:9347-1773316800-1773320400@ahckids.org
SUMMARY:Parent University - Good Debt vs Bad Debt in Special Needs Trust
DESCRIPTION:Demystifying debt 💵 \nJoin Protected Tomorrows’ Parent University Class 3 for a candid conversation regarding debt. In this class\, we will discuss: \n➡️Is there really such a thing as good debt?\n➡️ When should you pay down debt?\n➡️ Is there a creative way to use debt to fund a special needs trust? \n📅 March 12\, 2026\n⏰ 12 – 1pm CDT\n💻 Zoom Webinar \n🔗Register TODAY: https://protectedtomorrows.com/…/parent-university…/ \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-good-debt-vs-bad-debt-in-special-needs-trust/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/10/Parent-University-e1759906680597.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260315T080000
DTEND;TZID=America/New_York:20260315T170000
DTSTAMP:20260421T005858
CREATED:20260227T165932Z
LAST-MODIFIED:20260227T165932Z
UID:9308-1773561600-1773594000@ahckids.org
SUMMARY:The Caregiver’s Compass Training
DESCRIPTION:The Caregiver’s Compass is a free\, four-week virtual course designed for parents and caregivers who want practical tools and meaningful connection.\nThroughout this interactive series\, caregivers will:\n• Learn strategies for managing stress\n• Strengthen communication skills\n• Build tools to support mental wellbeing\n• Connect in a supportive\, community-centered space\nEach live session is guided by licensed therapist Brad Thompson\, offering expert insight in a compassionate and welcoming environment.\n🗓 Register by March 15\n🔗 Sign up here:\nhttps://www.surveymonkey.com/r/CaregiversCompass\nFor more information:\nhttps://tinyurl.com/3w3rkaz6
URL:https://ahckids.org/event/the-caregivers-compass-training/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/02/Caregivers-Compass-flyer2-e1772211376776.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260325T190000
DTEND;TZID=America/New_York:20260325T210000
DTSTAMP:20260421T005858
CREATED:20260312T144735Z
LAST-MODIFIED:20260312T144830Z
UID:9358-1774465200-1774472400@ahckids.org
SUMMARY:How Your AHC Data Drives Research and Improves Care - Webinar 3/25
DESCRIPTION:Join us for an upcoming 𝗔𝗛𝗖 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 featuring 𝗗𝗿. 𝗡𝘂𝘁𝗮𝗻 𝗦𝗵𝗮𝗿𝗺𝗮 𝗳𝗿𝗼𝗺 𝗛𝗮𝗿𝘃𝗮𝗿𝗱 𝗨𝗻𝗶𝘃𝗲𝗿𝘀𝗶𝘁𝘆 𝗮𝗻𝗱 𝗠𝗮𝘀𝘀𝗮𝗰𝗵𝘂𝘀𝗲𝘁𝘁𝘀 𝗚𝗲𝗻𝗲𝗿𝗮𝗹 𝗛𝗼𝘀𝗽𝗶𝘁𝗮𝗹. \n📅 March 25th\n⏰ 7:00 PM EDT\nRegister Here: 🔗 https://tinyurl.com/ypdh3wua \nDr. Sharma will introduce a 𝗻𝗲𝘄 𝘁𝘄𝗼-𝘆𝗲𝗮𝗿 𝗔𝗛𝗖 𝘀𝘁𝘂𝗱𝘆 designed to better understand how AHC evolves from childhood through adulthood.\nThis first-of-its-kind study will bring together 𝗽𝗲𝗱𝗶𝗮𝘁𝗿𝗶𝗰 𝗮𝗻𝗱 𝗮𝗱𝘂𝗹𝘁 𝗺𝗼𝘃𝗲𝗺𝗲𝗻𝘁 𝗱𝗶𝘀𝗼𝗿𝗱𝗲𝗿 𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗶𝘀𝘁𝘀 to study the entire AHC community.\nThe research aims to:\n• Understand how AHC changes over time\, including during puberty\n• Identify measurable indicators of disease severity\n• Improve ICU and emergency care protocols for AHC patients\nTo reduce the travel burden for families\, the study will offer 𝗺𝘂𝗹𝘁𝗶𝗽𝗹𝗲 𝗽𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗶𝗼𝗻 𝗼𝗽𝘁𝗶𝗼𝗻𝘀\, including:\n• In-person visits at family meetings\n• Regional appointments\n• Telehealth visits\n• Home collection kits\nCome learn about this exciting opportunity and 𝗵𝗮𝘃𝗲 𝘆𝗼𝘂𝗿 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 𝗮𝗻𝘀𝘄𝗲𝗿𝗲𝗱 𝗱𝗶𝗿𝗲𝗰𝘁𝗹𝘆 𝗯𝘆 𝗗𝗿. 𝗦𝗵𝗮𝗿𝗺𝗮.\n📅 March 25th\n⏰ 7:00 PM EDT\n🔗 https://tinyurl.com/ypdh3wua
URL:https://ahckids.org/event/how-your-ahc-data-drives-research-and-improves-care-webinar-3-25/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260408T130000
DTEND;TZID=America/New_York:20260408T150000
DTSTAMP:20260421T005858
CREATED:20260319T175235Z
LAST-MODIFIED:20260319T175415Z
UID:9368-1775653200-1775660400@ahckids.org
SUMMARY:Live Q & A Webinar with Denise Potter\, RDN -  Ketogenic Therapy
DESCRIPTION:Bring your questions and join the conversation.\nDate: April 8th\nTime: 1:00 pm EDT\nRegister: https://tinyurl.com/bdex5x99\n\nJoin us for a special 𝗹𝗶𝘃𝗲 𝗤&𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘄𝗶𝘁𝗵 𝗗𝗲𝗻𝗶𝘀𝗲 𝗣𝗼𝘁𝘁𝗲𝗿\, 𝗥𝗗𝗡\, founder of 𝗔𝗱𝘃𝗮𝗻𝗰𝗲𝗱 𝗞𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝗧𝗵𝗲𝗿𝗮𝗽𝗶𝗲𝘀\, who brings over 𝟯𝟯 𝘆𝗲𝗮𝗿𝘀 𝗼𝗳 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝗮𝘀 𝗮 𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱 𝗗𝗶𝗲𝘁𝗶𝘁𝗶𝗮𝗻 𝗡𝘂𝘁𝗿𝗶𝘁𝗶𝗼𝗻𝗶𝘀𝘁 𝗮𝗻𝗱 𝟭𝟳 𝘆𝗲𝗮𝗿𝘀 𝘀𝗽𝗲𝗰𝗶𝗮𝗹𝗶𝘇𝗶𝗻𝗴 𝗶𝗻 𝗸𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝗺𝗲𝘁𝗮𝗯𝗼𝗹𝗶𝗰 𝘁𝗵𝗲𝗿𝗮𝗽𝘆.\nWhen epilepsy is part of AHC\, families are often told to try medication after medication\, but rarely offered ketogenic therapy early. Why wait? Join Denise Potter\, dietitian and founder of Advanced Ketogenic Therapies\, for this Q&A session exploring how ketogenic therapy works\, why it’s often misunderstood\, and how it may support not only seizure control but other neurologic symptoms seen in AHC.\n\n\nDenise will help families better understand:\n\n\n• How ketogenic therapy works\n• Why it is often misunderstood or overlooked\n• How it may support seizure control and other neurologic symptoms seen in AHC\n• The role of 𝗻𝘂𝘁𝗿𝗶𝘁𝗶𝗼𝗻 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗮𝗻𝗱 𝘄𝗵𝗼𝗹𝗲 𝗳𝗼𝗼𝗱𝘀 in metabolic therapy\n• How thoughtful nutrition planning can support 𝗴𝘂𝘁 𝗵𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝗵𝗲𝗹𝗽 𝗮𝗱𝗱𝗿𝗲𝘀𝘀 𝗰𝗼𝗺𝗺𝗼𝗻 𝗰𝗼𝗻𝗰𝗲𝗿𝗻𝘀\n\n\nDenise’s work focuses on helping individuals and families access 𝘀𝗮𝗳𝗲\, 𝘀𝘁𝗿𝘂𝗰𝘁𝘂𝗿𝗲𝗱\, 𝗮𝗻𝗱 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵-𝗶𝗻𝗳𝗼𝗿𝗺𝗲𝗱 𝗸𝗲𝘁𝗼𝗴𝗲𝗻𝗶𝗰 𝘁𝗵𝗲𝗿𝗮𝗽𝗶𝗲𝘀 with personalized guidance and compassionate care.\n\n\nBring your questions and join the conversation.\n\n\n Date: April 8th\n Time: 1:00 pm EDT\n Register: https://tinyurl.com/bdex5x99\n\n\n\n\n\nDenise Bio:  \n\n\nWith over 33 years of experience as a Registered Dietitian Nutritionist\, and 17 years dedicated to Ketogenic Metabolic Therapy\, Denise has spent her career teaching\, training\, and supporting individuals and professionals worldwide. In recognition of her leadership in metabolic and brain health\, she was named an inaugural recipient of the Metabolic Mind Award from the Baszucki Brain Research Fund. She brings a deeply client-centered approach to her work and has a special passion for helping underserved populations access therapeutic ketogenic interventions safely and effectively. \nAdvanced Ketogenic Therapies grew from Denise’s recognition that many people were being told to “try keto\,” but few were given safe\, structured\, or research-informed guidance. She founded AKT to change that. Her vision was to create a place where clients could receive personalized plans\, thoughtful monitoring\, and compassionate support. She believes that when people are guided with clarity and care\, meaningful and lasting change is possible. \n\nAdvanced Ketogenic Therapies
URL:https://ahckids.org/event/9368/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260416T120000
DTEND;TZID=America/New_York:20260416T130000
DTSTAMP:20260421T005858
CREATED:20260401T183648Z
LAST-MODIFIED:20260319T184336Z
UID:9376-1776340800-1776344400@ahckids.org
SUMMARY:Parent University – Let’s Get Clear Together On Government Benefits
DESCRIPTION:In this in-depth session about government benefits\, we will cover: \n\nCan you ever know everything about the benefits available to you and your family?\nHow do you know if you have applied for everything possible? We’ll be talking about SSI\, SSDI\, DAC\, Medicare\, Medicaid\, SNAP\, and more.\n\n\nWhen:\nApril 16\, 2026    \n12:00 pm – 1:00 pm\nClick Here to Register
URL:https://ahckids.org/event/parent-university-lets-get-clear-together-on-government-benefits/
CATEGORIES:Upcoming Events
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:20260501T080000
DTEND;TZID=America/New_York:20260501T170000
DTSTAMP:20260421T005858
CREATED:20260304T162143Z
LAST-MODIFIED:20260304T162214Z
UID:9334-1777622400-1777654800@ahckids.org
SUMMARY:RARE Advocate Development (RAD) Brain Workshop
DESCRIPTION:We’re excited to share that the AHC Foundation has been invited to attend the RAREAdvocate Development (RAD) Brain Workshop this May in Boston! \n\n\n\nThis three-day intensive\, hosted by Global Genes\, the Rare Epilepsy Network (REN)\, and Mahzi Therapeutics\, brings together rare disease advocates who are actively accelerating research in their neurological conditions.\n\n\n\nFrom drug development and clinical trial design to regulatory strategy\, manufacturing\, and even drug repurposing\, this workshop is focused on building the knowledge and confidence needed to move therapies forward.\n\n\n\nWe’re honored to represent our community at this collaborative meeting at Alexion\, AstraZeneca Rare Disease\, and look forward to sharing key insights when we return.\n\n\n\nLearn more about the RAD Brain Workshop: https://globalgenes.org/rare-advocate-development-rad…/
URL:https://ahckids.org/event/rare-advocate-development-rad-brain-workshop/
CATEGORIES:Upcoming Events
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260924T080000
DTEND;TZID=America/New_York:20260926T170000
DTSTAMP:20260421T005858
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/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270625T080000
DTEND;TZID=America/New_York:20270628T170000
DTSTAMP:20260421T005858
CREATED:20260107T155210Z
LAST-MODIFIED:20260403T131722Z
UID:8893-1813910400-1814202000@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/
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END:VCALENDAR