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X-ORIGINAL-URL:https://thecutesyndrome.com
X-WR-CALDESC:Events for The Cute Syndrome Foundation
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260916T120000
DTEND;TZID=America/New_York:20260916T130000
DTSTAMP:20260903T185858Z
CREATED:20260903T185143Z
LAST-MODIFIED:20260903T185858Z
UID:2465-1789560000-1789563600@thecutesyndrome.com
SUMMARY:Community Power Hour\, Wednesday\, September 16\, 12pm EST
DESCRIPTION: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-september-16-12pm-est/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260904T120000
DTEND;TZID=America/New_York:20260904T130000
DTSTAMP:20260903T185822Z
CREATED:20260903T185127Z
LAST-MODIFIED:20260903T185822Z
UID:2463-1788523200-1788526800@thecutesyndrome.com
SUMMARY:Coffee and Chitchat Club\, Friday\, September 4\, 12:00 PM EST
DESCRIPTION: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-september-4-1200-pm-est/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260831T200000
DTEND;TZID=America/New_York:20260831T210000
DTSTAMP:20260823T193735Z
CREATED:20260823T193735Z
LAST-MODIFIED:20260823T193735Z
UID:2183-1788206400-1788210000@thecutesyndrome.com
SUMMARY:Virtual Book Club
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. Stay tuned for book announcements and discussion topics! \nThanks to the generous sponsorship of Neurocrine Biosciences and Praxis Precision Medicines\, we’re able to offer book purchase assistance to SCN8A families participating in our TCSF Book Club. We’re grateful for their support in helping us bring our community together through the power of stories. Please contact Kacie at kacie@thecutesyndrome.com for more information.
URL:https://thecutesyndrome.com/event/virtual-book-club/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260820T120000
DTEND;TZID=America/New_York:20260820T130000
DTSTAMP:20260823T193628Z
CREATED:20260823T193628Z
LAST-MODIFIED:20260823T193628Z
UID:2181-1787227200-1787230800@thecutesyndrome.com
SUMMARY:Bereavement Support Group
DESCRIPTION:Our virtual Bereavement Support Group offers a compassionate\, confidential space for bereaved parents to connect with others who understand the unique experience of grief after losing a child to an SCN8A-related disorder. For more information\, please contact Liz at liz@thecutesyndrome.com.
URL:https://thecutesyndrome.com/event/bereavement-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260819T120000
DTEND;TZID=America/New_York:20260819T130000
DTSTAMP:20260823T193531Z
CREATED:20260823T193531Z
LAST-MODIFIED:20260823T193531Z
UID:2179-1787140800-1787144400@thecutesyndrome.com
SUMMARY:New! Community Power Hour
DESCRIPTION:Living with SCN8A 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 co-working 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 SCN8A. We’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/new-community-power-hour/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260807T123000
DTEND;TZID=America/New_York:20260807T130000
DTSTAMP:20260823T193433Z
CREATED:20260823T193433Z
LAST-MODIFIED:20260823T193433Z
UID:2177-1786105800-1786107600@thecutesyndrome.com
SUMMARY:Coffee & Chitchat Club
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-chitchat-club-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260803
DTEND;VALUE=DATE:20260804
DTSTAMP:20260823T194328Z
CREATED:20260823T194328Z
LAST-MODIFIED:20260823T194328Z
UID:2186-1785715200-1785801599@thecutesyndrome.com
SUMMARY:Registration Opens for 4th Annual Virtual Run\, Roll\, & Stroll
DESCRIPTION:Join us anywhere\, anytime between October 3rd and October 31st\, 2026\, for a 5K or 1-mile virtual race for SCN8A awareness!
URL:https://thecutesyndrome.com/event/registration-opens-for-4th-annual-virtual-run-roll-stroll/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260801
DTEND;VALUE=DATE:20260902
DTSTAMP:20260823T193803Z
CREATED:20260823T193241Z
LAST-MODIFIED:20260823T193803Z
UID:2173-1785542400-1788307199@thecutesyndrome.com
SUMMARY:Dr. Mandy Harris Travel Grant Application Period
DESCRIPTION:If your family would like to attend the 2026 SCN8A Clinician\, Researcher\, and Family Gathering in Denver\, Colorado\, on December 4-5\, but needs help with travel costs\, we encourage you to apply for the Dr. Mandy Harris Travel Grant. Visit the Travel Grant page for additional details. \nApplications are open from August 1st to September 1st. Notifications will be made on or before September 15th.
URL:https://thecutesyndrome.com/event/dr-mandy-harris-travel-grant-opens/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260727T200000
DTEND;TZID=America/New_York:20260727T210000
DTSTAMP:20260731T144228Z
CREATED:20260731T144228Z
LAST-MODIFIED:20260731T144228Z
UID:1515-1785182400-1785186000@thecutesyndrome.com
SUMMARY:Virtual Book Club - Summer Check-In
DESCRIPTION:No assigned book this month\, just a chance to reconnect! Join your TCSF Book Club friends to catch up\, share what you’ve been reading\, and tell us how your summer has been. Whether you’ve finished five books or haven’t opened one yet\, we’d love to see you for some relaxed conversation and connection.\n\n\n\nREGISTER FOR BOOK CLUB
URL:https://thecutesyndrome.com/event/virtual-book-club-summer-check-in/
CATEGORIES:Virtual Family Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260710T120000
DTEND;TZID=America/New_York:20260710T130000
DTSTAMP:20260731T144316Z
CREATED:20260731T144249Z
LAST-MODIFIED:20260731T144316Z
UID:1517-1783684800-1783688400@thecutesyndrome.com
SUMMARY:Coffee & Chitchat Club
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\n\n\nPop in for a few minutes or stay the full hour—we’d love to see you. \n\n\n\n\nREGISTER FOR COFFEE & CHITCHAT
URL:https://thecutesyndrome.com/event/coffee-chitchat-club/
CATEGORIES:Virtual Family Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260707T173000
DTEND;TZID=America/New_York:20260707T183000
DTSTAMP:20260731T144354Z
CREATED:20260731T144354Z
LAST-MODIFIED:20260731T144354Z
UID:1520-1783445400-1783449000@thecutesyndrome.com
SUMMARY:Meaningful Change Series Session 3 | Co-Creating a Relationship of Care
DESCRIPTION:Hosted by Heather Bentley of Writing for Rare\, and featuring Dr. Nicole Cobo (Neurologist)\, Marcy Hoang (SCN8A caregiver) and Xuan Hoang (SCN8A warrior).\n\n\n\nWhen her daughter Xuan turned 19\, Marcy knew she couldn’t put off finding an adult neurologist much longer. She did her research and made an appointment with a local specialist who she’d met at an Epilepsy Foundation event. But when the day came for the appointment\, the doctor didn’t seem to hear anything Marcy was saying. He recommended repeating tests to confirm things Marcy had already explained to him. She started the neurologist search again\, and in February Xuan had her first visit with Dr. Nicole Cobo.\n\n\n\nIn this Meaningful Change session\, Marcy\, Xuan\, and Nicole will share their perspectives on what makes the provider – patient – caregiver relationship successful and what gets in the way. Families will hear how they are building a care relationship meant to last\, as well as practical recommendations for better healthcare interactions\, including pharmacy and insurance tips.\n\n\n\nREGISTER FOR MEANINGFUL CHANGE
URL:https://thecutesyndrome.com/event/meaningful-change-series-session-3-co-creating-a-relationship-of-care/
CATEGORIES:Virtual Family Events
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