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X-WR-CALNAME:The Cute Syndrome Foundation
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20261001
DTEND;VALUE=DATE:20261101
DTSTAMP:20260923T183952Z
CREATED:20260923T183438Z
LAST-MODIFIED:20260923T183952Z
UID:2609-1790812800-1793491199@thecutesyndrome.com
SUMMARY:Virtual Run\, Roll\, and Stroll for SCN8A
DESCRIPTION:Join The Cute Syndrome Foundation’s 12th Annual Virtual Run\, Roll & Stroll! Walk\, run\, or roll 1 mile or a 5K from anywhere\, on your own time\, while raising awareness and funds for the SCN8A community. Register as an individual racer or create a team! Visit runsignup.com/tcsfrace to register.
URL:https://thecutesyndrome.com/event/virtual-run-roll-and-stroll-for-scn8a/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261001T120000
DTEND;TZID=America/New_York:20261001T130000
DTSTAMP:20260929T202133Z
CREATED:20260929T202133Z
LAST-MODIFIED:20260929T202133Z
UID:2624-1790856000-1790859600@thecutesyndrome.com
SUMMARY:Bereaved Parent Support Group
DESCRIPTION:Those who have lost a child to SCN8A are invited to join us for a heartfelt conversation. Whether it’s reaching out to a friend\, navigating family dynamics\, or just saying “I’m not okay\,” this gathering is a safe space to share\, listen\, and connect with others who understand. No pressure to speak—just come as you are.
URL:https://thecutesyndrome.com/event/bereaved-parent-support-group/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261007T150000
DTEND;TZID=America/New_York:20261007T160000
DTSTAMP:20260909T181855Z
CREATED:20260909T181855Z
LAST-MODIFIED:20260909T181855Z
UID:2534-1791385200-1791388800@thecutesyndrome.com
SUMMARY:Webinar:  Research and Resources Roundtable Series | SCN8A Beyond Epilepsy: A New Virtual Study
DESCRIPTION:Join TCSF and Dr. Sunanjay Bajaj to learn about a study exploring the non-seizure symptoms of SCN8A-related disorders\, including movement\, behavior\, and communication. Dr. Bajaj will explain what researchers hope to learn\, how this research could improve our understanding of the full SCN8A experience\, and how families can participate virtually or at select in-person events.
URL:https://thecutesyndrome.com/event/webinar-research-and-resources-roundtable-series-scn8a-beyond-epilepsy-a-new-virtual-study/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261013T120000
DTEND;TZID=America/New_York:20261013T130000
DTSTAMP:20261012T182148Z
CREATED:20260909T181626Z
LAST-MODIFIED:20261012T182148Z
UID:2531-1791892800-1791896400@thecutesyndrome.com
SUMMARY:Webinar:  Research and Resources Roundtable Series | Navigating the Caregiving Journey with Courageous Parents Network
DESCRIPTION:Join Blair Young-Whitworth\, Director of Family Education and Engagement at Courageous Parents Network\, for an introduction to valuable resources designed to support families navigating the challenges of serious childhood illness and neurological conditions. Drawing from both her professional role and lived experience as a parent caregiver\, Blair will provide an overview of Courageous Parents Network (CPN) and NeuroJourney\, highlighting educational resources\, peer support opportunities\, and practical tools available to families throughout their caregiving journey.
URL:https://thecutesyndrome.com/event/webinar-research-and-resources-roundtable-series-navigating-the-caregiving-journey-with-courageous-parents-network/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261015
DTEND;VALUE=DATE:20261016
DTSTAMP:20260929T202229Z
CREATED:20260929T201857Z
LAST-MODIFIED:20260929T202229Z
UID:2621-1792022400-1792108799@thecutesyndrome.com
SUMMARY:Deadline: Faces of SCN8A Banner Submission
DESCRIPTION:Call for Annual “Faces of SCN8A” Banner Submissions\n\n\n\n\n\nEvery year TCSF creates a banner with photos of all SCN8A patients who submit a current photo. The banner is displayed at the Annual SCN8A Researcher\, Clinician\, and Family Gathering\, as well as on social media. Please fill out this form and provide a photo even if you have done so in years past.\n\n\n\n\nTo our bereaved families: If your Angel passed away after the creation of our last banner\, you are welcome to submit the form and include your favorite photo of your child. Parents of Angels who already appear in the banner do not need to submit a new photo each year. TCSF will continue to use current Angel photos unless otherwise instructed by parents/guardians.\n\n\n\n\n\n\nPlease click on the link to submit your photo: https://form.jotform.com/262514380770254\n\n\n 
URL:https://thecutesyndrome.com/event/deadline-faces-of-scn8a-banner-submission/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261016T120000
DTEND;TZID=America/New_York:20261016T130000
DTSTAMP:20260930T181740Z
CREATED:20260918T173241Z
LAST-MODIFIED:20260930T181740Z
UID:2549-1792152000-1792155600@thecutesyndrome.com
SUMMARY:Coffee and Chitchat Club\, Friday\, October 16th\, 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. \n  \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-october-2nd-1200-pm-est/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261021
DTEND;VALUE=DATE:20261022
DTSTAMP:20261009T175618Z
CREATED:20261009T175618Z
LAST-MODIFIED:20261009T175618Z
UID:2685-1792540800-1792627199@thecutesyndrome.com
SUMMARY:#StopSUDEP
DESCRIPTION:
URL:https://thecutesyndrome.com/event/stopsudep/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261021T120000
DTEND;TZID=America/New_York:20261021T130000
DTSTAMP:20260918T174847Z
CREATED:20260918T174847Z
LAST-MODIFIED:20260918T174847Z
UID:2553-1792584000-1792587600@thecutesyndrome.com
SUMMARY:Community Power Hour\, Wednesday\, October 21st\, 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-october-21st-12pm-est/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261026T200000
DTEND;TZID=America/New_York:20261026T210000
DTSTAMP:20260918T175215Z
CREATED:20260918T175215Z
LAST-MODIFIED:20260918T175215Z
UID:2556-1793044800-1793048400@thecutesyndrome.com
SUMMARY:Book Club\, Monday\, October 26th\, 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 \n 
URL:https://thecutesyndrome.com/event/book-club-monday-october-26th-8pm-et/
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