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X-WR-CALDESC:Events for The Cute Syndrome Foundation
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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
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: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;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;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;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;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: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: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/
END:VEVENT
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: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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260928T200000
DTEND;TZID=America/New_York:20260928T210000
DTSTAMP:20260903T185837Z
CREATED:20260903T185156Z
LAST-MODIFIED:20260903T185837Z
UID:2467-1790625600-1790629200@thecutesyndrome.com
SUMMARY:Book Club\, Monday\, September 28\, 8pm ET
DESCRIPTION: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! \n  \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-september-28-8pm-et/
END:VEVENT
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/
END:VEVENT
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/
END:VEVENT
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/
END:VEVENT
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;TZID=America/New_York:20261104T140000
DTEND;TZID=America/New_York:20261104T150000
DTSTAMP:20261101T180617Z
CREATED:20260909T181128Z
LAST-MODIFIED:20261101T180617Z
UID:2523-1793800800-1793804400@thecutesyndrome.com
SUMMARY:Webinar:  Research and Resources Roundtable Series | Understanding Dysautonomia in Neurodevelopmental Disorders
DESCRIPTION:Join Dr. Lauren Treat and Dr. Anna Leigh McVicar of Children’s Hospital Colorado for a family-friendly introduction to dysautonomia and how it can affect some children with neurodevelopmental disorders like SCN8A. Through a brief overview and real-world case examples\, we’ll explore how autonomic symptoms can present\, what families may notice\, and how these symptoms may be evaluated and managed. The presentation will be followed by an open Q&A with families.
URL:https://thecutesyndrome.com/event/webinar-research-and-resources-roundtable-series-understanding-dysautonomia-in-neurodevelopmental-disorders/
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/
END:VEVENT
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
END:VEVENT
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
END:VCALENDAR