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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260325T190000
DTEND;TZID=America/New_York:20260325T210000
DTSTAMP:20260403T225732
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/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2026/03/Sharma-Webinar-e1773326801200.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260315T080000
DTEND;TZID=America/New_York:20260315T170000
DTSTAMP:20260403T225732
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:20260312T120000
DTEND;TZID=America/New_York:20260312T130000
DTSTAMP:20260403T225732
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:20260311T130000
DTEND;TZID=America/New_York:20260311T140000
DTSTAMP:20260403T225732
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:20260225T180000
DTEND;TZID=America/New_York:20260225T190000
DTSTAMP:20260403T225732
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:20260212T130000
DTEND;TZID=America/New_York:20260212T140000
DTSTAMP:20260403T225732
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:20260202T120000
DTEND;TZID=America/New_York:20260223T000000
DTSTAMP:20260403T225732
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:20260114T130000
DTEND;TZID=America/New_York:20260114T140000
DTSTAMP:20260403T225732
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:20260113T080000
DTEND;TZID=America/New_York:20260130T170000
DTSTAMP:20260403T225732
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:20251210T130000
DTEND;TZID=America/New_York:20251210T140000
DTSTAMP:20260403T225732
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:20251119T130000
DTEND;TZID=America/New_York:20251119T140000
DTSTAMP:20260403T225732
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:20251112T130000
DTEND;TZID=America/New_York:20251112T140000
DTSTAMP:20260403T225732
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:20251106T080000
DTEND;TZID=America/New_York:20251221T170000
DTSTAMP:20260403T225732
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;VALUE=DATE:20251104
DTEND;VALUE=DATE:20260101
DTSTAMP:20260403T225732
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;VALUE=DATE:20251102
DTEND;VALUE=DATE:20260101
DTSTAMP:20260403T225732
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;TZID=America/New_York:20251022T130000
DTEND;TZID=America/New_York:20251022T140000
DTSTAMP:20260403T225732
CREATED:20251011T153732Z
LAST-MODIFIED:20251013T165052Z
UID:8641-1761138000-1761141600@ahckids.org
SUMMARY:"Can I Have Joy/Peace Without Being Naive or In Denial?"
DESCRIPTION:Parenting a child with AHC means facing moments of stress\, resilience\, purpose\, and anticipatory grief.\nJoin counselor Brad Thompson\, MA\, LPC-S for a heartfelt session on finding joy and peace  — even through naivety and denial. \n Practical tools. Real talk. Hope you can hold on to.\n Wednesday\, October 22\n 12:00 – 1:00 PM CST (40-minute presentation + 20-minute live Q&A)\n Hosted by the Alternating Hemiplegia of Childhood Foundation\nOpen to all AHC families and caregivers. \nRegister Here
URL:https://ahckids.org/event/can-i-have-joy-peace-without-being-naive-or-in-denial/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251019T080000
DTEND;TZID=America/New_York:20251021T170000
DTSTAMP:20260403T225732
CREATED:20250829T223344Z
LAST-MODIFIED:20250829T223915Z
UID:8575-1760860800-1761066000@ahckids.org
SUMMARY:NORD Breakthrough Summit
DESCRIPTION:Check out this information-filled event!
URL:https://ahckids.org/event/nord-breakthrough-summit/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251009T130000
DTEND;TZID=America/New_York:20251009T140000
DTSTAMP:20260403T225732
CREATED:20251008T070405Z
LAST-MODIFIED:20251008T070405Z
UID:8634-1760014800-1760018400@ahckids.org
SUMMARY:Parent University - Sibling Panel - The Future without us
DESCRIPTION:Parent University: Sibling Panel – The Future Without UsMany of us hope that siblings will one day step into our shoes — but how do they really feel about that? What do they need to know\, and when is the right time to share it?Join Protected Tomorrows’ Parent University on October 9th\, 12:00–1:00 PM CT for a powerful Sibling Panel where brothers and sisters share their real experiences\, insights\, and hopes for the future. Hosted by Mary Anne Ehlert\, Partner\, Protected Tomorrows October 9\, 2025 | 12–1 PM CT Register here: https://protectedtomorrows.com/parent-university…/Let’s start the conversation that helps bring peace of mind — for parents and siblings alike.
URL:https://ahckids.org/event/parent-university-sibling-panel-the-future-without-us/
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:20251008T130000
DTEND;TZID=America/New_York:20251008T140000
DTSTAMP:20260403T225732
CREATED:20251002T142347Z
LAST-MODIFIED:20251002T142347Z
UID:8632-1759928400-1759932000@ahckids.org
SUMMARY:AHCF Family Circle
DESCRIPTION:You’re Invited! \nJoin us for our next AHCF Family Circle on Wednesday\, October 8th 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/
ATTACH;FMTTYPE=image/png:https://ahckids.org/wp-content/uploads/2025/10/AHC-Family-Circle-6.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250924T120000
DTEND;TZID=America/Chicago:20250924T130000
DTSTAMP:20260403T225732
CREATED:20250909T021855Z
LAST-MODIFIED:20250909T022202Z
UID:8601-1758715200-1758718800@ahckids.org
SUMMARY:Dystonia Webinar September 24
DESCRIPTION:Registration is Now Open for the Dr. Nutan Sharma Webinar!\nWe are thrilled to announce that registration is now open for our upcoming webinar with Dr. Nutan Sharma\, a world-renowned leader in movement disorders. \n✨ The webinar is free to attend\, but registration is required. When you register\, you will immediately receive a confirmation email with the link to join.  👉 https://tinyurl.com/pkjk87pu \nDon’t miss this opportunity to learn directly from one of the foremost experts in the field!\n#dystoniaawareness #AHCF #CareCantWait \n 
URL:https://ahckids.org/event/dystonia-webinar-september-24/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/09/Dystonia-webinar-9-2025.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250915
DTEND;VALUE=DATE:20250917
DTSTAMP:20260403T225732
CREATED:20250721T162300Z
LAST-MODIFIED:20250730T021510Z
UID:8547-1757894400-1758067199@ahckids.org
SUMMARY:ATP1A3 Symposium - September 15 & 16
DESCRIPTION:The 13th ATP1A3 in Disease Symposium will take place (virtually) on 15 and 16 September 2025  in Cairns\, Australia\, in conjunction with the  17th International Meeting on P-Type ATPases in Health & Disease \n\n\n\n\nThe Program of the 13th Symposium is set up to allow speakers and participants from  Australia and Asia Pacific \, but also  from all other parts of the world to join live or see the recorded sessions soon after the end of the streaming. There are two joint sessions with the 17th P-Type ATPase meeting that will be live-streamed from Cairns (15 Sep\, 18:00-19:30 AEST and 16 Sep\, 18:00-20:00 AEST). Here\, the time schedule of the Symposium. Warm welcome to delegates joining us virtually for the Symposium alone\, and to those joining in-person in Cairns\, Australia!Registration\nTo participate in the 13th Symposium\, you need to register on the site of the Conference https://iupab.org/atpase-conference-registration/. Early bird registration deadline is 25 July 2025.\n  \nUpdated Program NEW\nInvited Speakers NEW \nIf you have any issues or questions regarding registration and abstract submission\, please  email ronald.clarke@sydney.edu.au or  melody.li@florey.edu.au
URL:https://ahckids.org/event/atp1a3-symposium-september-15-16/
CATEGORIES:Upcoming Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250619T080000
DTEND;TZID=America/New_York:20250621T170000
DTSTAMP:20260403T225732
CREATED:20250323T165815Z
LAST-MODIFIED:20250523T022702Z
UID:8154-1750320000-1750525200@ahckids.org
SUMMARY:Time is Running Out! Family Meeting 2025
DESCRIPTION:Last chance!  Don’t miss the opportunity to meet with the expert AHC community of providers and parents on June 19\, 2025. We have researchers\, treating physicians\, family support and more all speaking on the latest information\, and helpful tips and tricks\, regarding AHC. Please don’t miss this opportunity to spend time with other AHC parents\, and have your kids play or simply hang out with other AHC kids and adults. Moreover\, it’s the AHC Foundation’s 30th Anniversary and we are going all out to make this the best Family Meeting yet! Join us! \nMeeting Info & Registration Link
URL:https://ahckids.org/event/family-meeting-2025/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2025/01/Family-Meeting-registration-2025.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250331T080000
DTEND;TZID=America/New_York:20250331T170000
DTSTAMP:20260403T225732
CREATED:20250331T195208Z
LAST-MODIFIED:20250331T200031Z
UID:8221-1743408000-1743440400@ahckids.org
SUMMARY:Family Fun in Cincinnati: A Perfect Getaway! 
DESCRIPTION:Looking for the perfect family vacation? Cincinnati is a hidden gem packed with unforgettable experiences for kids and parents alike! \n Explore & Learn – From hands-on exhibits at the Cincinnati Museum Center to the wonders of the Newport Aquarium\, every day is an adventure! \n Outdoor Fun – Take in the stunning riverfront at Smale Park\, ride the Carol Ann’s Carousel\, or watch the world go by on a BB Riverboat Cruise.  Kid-Approved Eats – Enjoy local favorites like Skyline Chili or grab a sweet treat at Graeter’s Ice Cream!  Sports & Entertainment – Catch a Reds game\, cheer on FC Cincinnati\, or explore the city’s vibrant arts scene. No matter what your family loves\, Cincinnati is full of adventure\, discovery\, and joy!  Have you taken a family trip here? Tell us your favorite Cincinnati memories! www.ahckids.org#AHCFamilyMeeting #KidFriendlyCincinnati #ExploreOhio \nSee less
URL:https://ahckids.org/event/8221/
CATEGORIES:Upcoming Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240928T140000
DTEND;TZID=America/New_York:20240928T150000
DTSTAMP:20260403T225732
CREATED:20240827T063403Z
LAST-MODIFIED:20240913T134710Z
UID:7299-1727532000-1727535600@ahckids.org
SUMMARY:Support Group for AHC\, Monthly Family Circle
DESCRIPTION:Join us for our next AHCF Family Circle on Saturday\, September 28th at 11am PST/ 1pm CST/ 2pm EST. This 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! If you have questions\, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.\n\n\n\nJoin Zoom Meeting: https://us02web.zoom.us/j/85227963024…\n\n\n\nSign up for text message reminders for AHCF Family Circle at: https://www.remind.com/join/familyahc?utm_medium=ios
URL:https://ahckids.org/event/support-group-for-ahc-monthly-family-circle/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2024/08/family-circle-image-e1724726190315.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240706
DTEND;VALUE=DATE:20240707
DTSTAMP:20260403T225732
CREATED:20240617T212149Z
LAST-MODIFIED:20240913T173436Z
UID:7172-1720224000-1720310399@ahckids.org
SUMMARY:Join the Freedom Run on July 6
DESCRIPTION:A 4th of July run for a cure benefiting Alternating Hemiplegia of Childhood Foundation.
URL:https://ahckids.org/event/join-the-freedom-run-on-july-6/
LOCATION:Edinburg Municipal Park\, 714 S. Raul Longoria\, Edinburg\, TX\, 78504\, United States
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2024/05/Freedom-Run-AHCF-NEW-e1715818050129.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240627T190000
DTEND;TZID=Asia/Dubai:20240627T200500
DTSTAMP:20260403T225732
CREATED:20240619T235207Z
LAST-MODIFIED:20240619T235515Z
UID:7203-1719514800-1719518700@ahckids.org
SUMMARY:Empowered Parenting: Thriving as a Single Parent Raising a Rare Disease Child
DESCRIPTION:The National Organization for Rare Disorders (NORD) invites you to join us for a comprehensive\, supportive\, and closed-door discussion about raising a rare disease child or children as a single parent. \nDate: Thursday\, June 27\, 2024\nTime: 7:00 p.m. – 8:05 p.m. ET\nLocation: Virtual via Zoom \nYou will hear from single rare parents about tools\, resources\, and information they have utilized to navigate the unique challenges of raising their kids. This session will offer strategies to help both you and your child thrive. Plus\, you will get to connect with other parents facing similar journeys and leave feeling empowered and equipped to tackle the challenges of raising a child with a rare disease with confidence and resilience. \nRegister for this Community Conversation here. \nWe encourage you to forward this invitation to others who might benefit from attending!
URL:https://ahckids.org/event/empowered-parenting-thriving-as-a-single-parent-raising-a-rare-disease-child/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2024/06/NORD-single-parent-webinar-6-19-24.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240202T190000
DTEND;TZID=UTC:20240202T193000
DTSTAMP:20260403T225732
CREATED:20240115T013319Z
LAST-MODIFIED:20240115T013728Z
UID:6746-1706900400-1706902200@ahckids.org
SUMMARY:Warriors for Kathryn Quilt Raffle
DESCRIPTION:Kaleidoscope of Hope is the name of this year’s quilt to be raffled off at the Warriors for Kathryn event on February 2\, 2024\, in Cornersville\, Indiana.\n\n\n\nWarriors for Kathryn 2024 Quilt Raffle Information:\nQuilting tradition asks for a name to be selected for a quilt. “Kaleidoscope of Hope” is the name given to this year’s\nWarriors for Kathryn 2024 quilt with all proceeds going directly to AHC research.\n\n\n85” by 85” – King or Queen or Full (King coverlet with 6.5 in drop\, Queen Bedspread with 12.5 in drop\, Full Bedspread with 15.5 in drop)\n\nThe quilt top is a traditionally pieced (by machine) from a Sue Garman pattern called Stars for a New Day. There are a total of 4\,050 individual pieces in the quilt top. It uses a mix of batiks and prints- 100% cotton. The backing of the quilt is made from Moda 100% cotton and the double batting of Quilter’s Dream\n\n\nWool (washable and hypoallergenic) over Dream Poly\, both washable and hypoallergenic. ……made by Christine Marszalek\n\n\n\nTicket Information:\n• Online Raffle Ticket Sales will close at 1pm Eastern Time on the drawing day.\n• Tickets will be available at the event until 6:45pm Eastern Time.\n• Tickets cost $5 per chance.\n• Buy 4 tickets for $20 and get one free.\n• Each $20 gets you 5 tickets. (10 for $40\, 15 for $60\, 20 for $80….)\n\n\nTo enter the raffle and learn more about AHC\, go to:\nhttps://ahckids.app.neoncrm.com/eventReg.jsp?event=72&
URL:https://ahckids.org/event/warriors-for-kathryn-quilt-raffle/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2024/01/QuiltRaffle-2024.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Indiana/Indianapolis:20240202T170000
DTEND;TZID=America/Indiana/Indianapolis:20240202T230000
DTSTAMP:20260403T225732
CREATED:20240115T012003Z
LAST-MODIFIED:20240115T013758Z
UID:6740-1706893200-1706914800@ahckids.org
SUMMARY:Warriors for Kathryn
DESCRIPTION:FRIDAY FEBRUARY 2\,2024 \n5PM \nExpo Hall – 2691 N. Park Rd. Connersville\, IN \nHelp support a worthy cause through Warriors for Kathryn at Expo Hall in Connersville! Follow the event page on Facebook at https://fb.me/e/3F5hfAh9p for more information on Wine Bingo\, Texas Hold’em\, Dinner\, Basket Raffle\, Quilt Raffle\, and more!
URL:https://ahckids.org/event/warriors-for-kathryn-2/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2023/05/Event-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240131
DTEND;VALUE=DATE:20240201
DTSTAMP:20260403T225732
CREATED:20240115T012958Z
LAST-MODIFIED:20240115T012958Z
UID:6742-1706659200-1706745599@ahckids.org
SUMMARY:Valentine's Exchange 2024
DESCRIPTION:Hello AHC families! It’s time for the AHC Valentine’s Day card exchange. This started as a way to keep our children connected between family meetings (before social media). All ages can participate! Each child/adult sends a card to all participating. Some send a photo card\, handmade card\, stickers\, or drawing/coloring. To participate\, email your child’s name\, address\, and age to heather@ahckids.org by January 31st. A list of all participating will be emailed out to you by February 2nd.
URL:https://ahckids.org/event/valentines-exchange-2024/
ATTACH;FMTTYPE=image/jpeg:https://ahckids.org/wp-content/uploads/2024/01/ValentinesExchange2024.jpg
ORGANIZER;CN="Heather Gates":MAILTO:heather@ahckids.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231225
DTEND;VALUE=DATE:20231226
DTSTAMP:20260403T225732
CREATED:20230510T024518Z
LAST-MODIFIED:20230510T024518Z
UID:2725-1703462400-1703548799@ahckids.org
SUMMARY:Happy Birthday Joey!
DESCRIPTION:December 25\, 2023 \nJoey Hawk turns 11 today\, join us in wishing him a happy birthday and give the gift of hope for an AHC free future by donating to AHCF.
URL:https://ahckids.org/event/happy-birthday-joey/
END:VEVENT
END:VCALENDAR