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X-ORIGINAL-URL:https://thecutesyndrome.com
X-WR-CALDESC:Events for The Cute Syndrome Foundation
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TZID:America/New_York
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DTSTART:20250309T070000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20261101
DTEND;VALUE=DATE:20261201
DTSTAMP:20261101T181411Z
CREATED:20261101T175518Z
LAST-MODIFIED:20261101T181411Z
UID:2721-1793491200-1796083199@thecutesyndrome.com
SUMMARY:Epilepsy Awareness Month
DESCRIPTION:Epilepsy affects many individuals and families in our SCN8A community\, shaping daily life in ways both seen and unseen. This month\, we’re raising awareness by creating special profile frames and collecting and sharing stories from our community. We invite you to share a photo\, a challenge you’ve faced\, a milestone you’ve celebrated\, or something you wish others understood about living with epilepsy. Together\, we can help the world see the people and families behind the diagnosis. \n\nSubmit your story: form.jotform.com/Frappier/-epilepsy-awareness-month\nCreate a social media profile frame: canva.link/cfuq0s9rhh3av2a
URL:https://thecutesyndrome.com/event/epilepsy-awareness-month/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261105
DTEND;VALUE=DATE:20261106
DTSTAMP:20261101T175713Z
CREATED:20261101T175713Z
LAST-MODIFIED:20261101T175713Z
UID:2723-1793836800-1793923199@thecutesyndrome.com
SUMMARY:Deadline: Annual Gathering Family Registration
DESCRIPTION:Join The Cute Syndrome Foundation for our 12th Annual SCN8A Clinician\, Researcher\, and Family Gathering in Denver\, Colorado\, on December 4–5\, 2026! \nThis annual event brings together SCN8A families\, clinicians\, researchers\, and industry partners to share the latest research\, connect with one another\, and strengthen our community. Attendance is free for SCN8A families\, and a virtual option is available for those unable to join us in person. \nFamilies must register by November 5 to receive a free event shirt and welcome gift! Registration will remain open after November 5\, but shirts and welcome gifts may not be available for late registrants.
URL:https://thecutesyndrome.com/event/deadline-annual-gathering-family-registration/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261106T120000
DTEND;TZID=America/New_York:20261106T130000
DTSTAMP:20261023T185432Z
CREATED:20261023T185432Z
LAST-MODIFIED:20261023T185432Z
UID:2692-1793966400-1793970000@thecutesyndrome.com
SUMMARY:Coffee and Chitchat Club\, Friday\, November 6th\, 12:00 PM EST
DESCRIPTION:Take a break and join us for our monthly Chaos\, Coffee & Chitchat Club! This hour-long\, volunteer-led meetup is designed for SCN8A caregivers to come exactly as you are—no structure\, no agenda\, just space to connect with others who truly understand. Whether you’re juggling appointments\, sipping coffee in pajamas\, or just need to be around people who “get it\,” this is your time. \nPop in for a few minutes or stay the full hour—we’d love to see you.
URL:https://thecutesyndrome.com/event/coffee-and-chitchat-club-friday-november-6th-1200-pm-est/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261109T120000
DTEND;TZID=America/New_York:20261109T130000
DTSTAMP:20261101T175934Z
CREATED:20261101T175934Z
LAST-MODIFIED:20261101T175934Z
UID:2727-1794225600-1794229200@thecutesyndrome.com
SUMMARY:SCN8A Family Connection: Meet\, Share & Learn
DESCRIPTION:Join other families and the TCSF team to share experiences\, ask questions\, and find connections—whether you’re newly diagnosed or just ready to meet the community. \nWhen: Nov 9\, 2026 12:00 PM Eastern Time  \nRegister in advance for this meeting: \nhttps://us02web.zoom.us/meeting/register/kD1LUGF4SbiS_beICmCeQg
URL:https://thecutesyndrome.com/event/scn8a-family-connection-meet-share-learn/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261110T130000
DTEND;TZID=America/New_York:20261110T140000
DTSTAMP:20261007T172055Z
CREATED:20261007T172055Z
LAST-MODIFIED:20261007T172055Z
UID:2673-1794315600-1794319200@thecutesyndrome.com
SUMMARY:Research and Resources Roundtable Series | Epilepsy Surgery Saves Lives: Exploring Neuromodulation Options (VNS\, RNS\, DBS) for SCN8A
DESCRIPTION:Speakers: \n\nDr. Nancy McNamara\, MD\, Division Chief of Pediatric Neurology\, Corewell Health East\nMonika Jones\, JD\, Executive Director & Founder\, Pediatric Epilepsy Surgery Alliance\n\nDescription: Join The Cute Syndrome Foundation and guest speakers from the Pediatric Epilepsy Surgery Alliance (PESA) for an educational webinar on neuromodulation and surgical options for SCN8A-related epilepsy.\nIn this session\, Dr. Nancy McNamara will discuss when families and care teams should consider pediatric epilepsy surgery for genetic epilepsies\, with a focus on neuromodulation therapies\, including Vagus Nerve Stimulation (VNS)\, Responsive Neurostimulation (RNS)\, and Deep Brain Stimulation (DBS).\nMonika Jones will share PESA’s “Epilepsy Surgery Saves Lives” campaign\, along with critical resources\, tools\, and support programs to help families navigate the surgical journey and empower them every step of the way. \n  \nSpeakers: Dr. Nancy McNamara\, MD\, is the Division Chief of Pediatric Neurology at Corewell Health East. She is a pediatric epileptologist with a specialized focus on pediatric epilepsy surgery and genetic epilepsies. Dr. McNamara serves on the Scientific Advisory Board of the Pediatric Epilepsy Surgery Alliance and works closely with research collaboratives to improve surgical decision-making and functional outcomes for children with drug-resistant epilepsy. \nMonika Jones\, JD\, is the Founder and Executive Director of the Pediatric Epilepsy Surgery Alliance and the Principal Investigator of the Global Pediatric Epilepsy Surgery Registry. Inspired by her son’s journey with brain surgery in infancy\, she founded PESA to ensure families navigating pediatric epilepsy surgery receive comprehensive support\, evidence-based resources\, and community connections at every step of their journey.
URL:https://thecutesyndrome.com/event/research-and-resources-roundtable-series-epilepsy-surgery-saves-lives-exploring-neuromodulation-options-vns-rns-dbs-for-scn8a/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261115
DTEND;VALUE=DATE:20261116
DTSTAMP:20261101T181326Z
CREATED:20261101T180119Z
LAST-MODIFIED:20261101T181326Z
UID:2729-1794700800-1794787199@thecutesyndrome.com
SUMMARY:Deadline: Nominate Your Clinician
DESCRIPTION:Nominate your doctor for the Champions for Understanding\, Treating\, Investigating\, and Empowering those with SCN8A (CUTIES) Award. This award will be presented to a clinician who has: Exceeded expectations of his/her practice or profession\, made a significant difference in the life of a patient or caregiver\, contributed substantially to the SCN8A community through community service or support\, provided high level leadership to TCSF\, and/or fostered the spread of knowledge of SCN8A.\n\n\n\nNominations are due by November 15th. Click here to submit.
URL:https://thecutesyndrome.com/event/deadline-nominate-your-clinician/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261116T090000
DTEND;TZID=America/New_York:20261116T170000
DTSTAMP:20261009T171236Z
CREATED:20261009T171236Z
LAST-MODIFIED:20261009T171236Z
UID:2677-1794819600-1794848400@thecutesyndrome.com
SUMMARY:Epilepsy Awareness & Education Expo
DESCRIPTION:People of all ages with epilepsy and their families and friends are invited to attend the Epilepsy Day at Disneyland Expo\, featuring non-Profit support groups\, epilepsy centers\, drug and related product manufacturers\, seizure dogs and their trainers\, and epilepsy professionals from around the world. \n\nCome by the expo to visit The Cute Syndrome Foundation’s table and meet TCSF volunteers!
URL:https://thecutesyndrome.com/event/epilepsy-awareness-education-expo/
LOCATION:Disneyland Hotel Convention Center\, 1150 W. Magic Way\, Anaheim\, CA\, 92802\, United States
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261117T090000
DTEND;TZID=America/New_York:20261117T170000
DTSTAMP:20261009T171455Z
CREATED:20261009T171455Z
LAST-MODIFIED:20261009T171455Z
UID:2682-1794906000-1794934800@thecutesyndrome.com
SUMMARY:Epilepsy Awareness & Education Expo
DESCRIPTION:People of all ages with epilepsy and their families and friends are invited to attend the Epilepsy Day at Disneyland Expo\, featuring non-Profit support groups\, epilepsy centers\, drug and related product manufacturers\, seizure dogs and their trainers\, and epilepsy professionals from around the world. \n\nCome by the expo to visit The Cute Syndrome Foundation’s table and meet TCSF volunteers!
URL:https://thecutesyndrome.com/event/epilepsy-awareness-education-expo-2/
LOCATION:Disneyland Hotel Convention Center\, 1150 W. Magic Way\, Anaheim\, CA\, 92802\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261118T120000
DTEND;TZID=America/New_York:20261118T130000
DTSTAMP:20261023T185726Z
CREATED:20261023T185726Z
LAST-MODIFIED:20261023T185726Z
UID:2698-1795003200-1795006800@thecutesyndrome.com
SUMMARY:Community Power Hour\, Wednesday\, November 18th\, 12pm EST
DESCRIPTION:Living with 8A often means spending hours navigating insurance companies\, coordinating medical care\, sending difficult emails to doctors\, completing paperwork\, and managing countless other tasks that most people never see. These responsibilities can feel overwhelming—but they don’t have to be faced alone. \nCommunity Power Hour is a virtual coworking session that offers accountability\, connection\, and moral support while you tackle whatever is on your to-do list. Whether you’re making an important phone call\, organizing medical records\, catching up on emails\, working on a project\, or even folding laundry\, you’ll be joined by others who understand the unique realities of life with 8A. \nWe’ll start with a brief check-in to share our goals\, spend about 45–50 minutes working independently together\, and finish with a quick wrap-up to celebrate our progress. Sometimes\, simply knowing others are working alongside you is all the encouragement you need.
URL:https://thecutesyndrome.com/event/community-power-hour-wednesday-november-18th-12pm-est/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261130T200000
DTEND;TZID=America/New_York:20261130T210000
DTSTAMP:20261023T190021Z
CREATED:20261023T190021Z
LAST-MODIFIED:20261023T190021Z
UID:2702-1796068800-1796072400@thecutesyndrome.com
SUMMARY:Book Club\, Monday\, November 30th\, 8pm ET
DESCRIPTION:Join the TCSF Book Club for an engaging discussion on our latest book selection! Whether you’re an avid reader or just looking to connect with the SCN8A community\, this is a great way to unwind and share thoughts. Check the support group for the latest book announcements and discussion topics! \nIf you’d like help obtaining a copy\, you can request your preferred format (electronic\, paper\, or audio) here:  https://form.jotform.com/250905137276054
URL:https://thecutesyndrome.com/event/book-club-monday-november-30th-8pm-et/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261204
DTEND;VALUE=DATE:20261206
DTSTAMP:20260823T194708Z
CREATED:20260823T194635Z
LAST-MODIFIED:20260823T194708Z
UID:2188-1796342400-1796515199@thecutesyndrome.com
SUMMARY:2026 SCN8A Annual Gathering
DESCRIPTION:Join us in Denver\, CO\, on December 4th-5th\, 2026\, for the 2026 SCN8A Annual Gathering! Check out the Annual Gathering page for more information.
URL:https://thecutesyndrome.com/event/2026-scn8a-annual-gathering/
LOCATION:Embassy Suites Downtown Denver Convention\, 1420 Stout St\, Denver\, CO\, 80202\, United States
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