BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//The Cute Syndrome Foundation - ECPv6.18.0//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://thecutesyndrome.com
X-WR-CALDESC:Events for The Cute Syndrome Foundation
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20270314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20271107T060000
END:STANDARD
END:VTIMEZONE
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: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
END:VCALENDAR