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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260327T080000
DTEND;TZID=America/New_York:20260327T170000
DTSTAMP:20260403T191356
CREATED:20260327T171543Z
LAST-MODIFIED:20260327T171543Z
UID:10000178-1774598400-1774630800@www.tscalliance.org
SUMMARY:TCS New York City Marathon
DESCRIPTION:Run with the Team TSC in the TCS New York City Marathon on Sunday\, November 1\, 2026. \nCOmplete the Interest form here
URL:https://www.tscalliance.org/event/tcs-new-york-city-marathon/
LOCATION:FL
CATEGORIES:Team TSC
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2026/03/TCSNYM26_Charity_RGB_FC-e1773069207336.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260318T200000
DTEND;TZID=America/New_York:20260318T210000
DTSTAMP:20260403T191356
CREATED:20251124T203453Z
LAST-MODIFIED:20251124T203537Z
UID:10000144-1773864000-1773867600@www.tscalliance.org
SUMMARY:Adult Topic Call - March 2026
DESCRIPTION:The March topic call will take place on Wednesday\, March 18\, 2026 at 8 pm ET. Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. \nREGISTER HERE
URL:https://www.tscalliance.org/event/adult-topic-call-march-2026/
LOCATION:FL
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260209T200000
DTEND;TZID=America/New_York:20260209T210000
DTSTAMP:20260403T191356
CREATED:20251202T193948Z
LAST-MODIFIED:20260116T164511Z
UID:10000150-1770667200-1770670800@www.tscalliance.org
SUMMARY:Ask an Advocate - February 2026
DESCRIPTION:Join us for an Ask an Advocate session!\n\n\n\nJoin Wendy Anderson\, TSC Alliance Education Peer Mentor\, on Monday\, February 9\, 2026\, at 8 pm ET as she leads a focused and empowering conversation on how families impacted by TSC and other disabilities can engage in meaningful policy advocacy at the local\, state\, and federal levels. Wendy will share her experience as a parent-advocate and offer clear\, practical ways to involve the whole family in influencing legislation\, shaping public policy\, and elevating the voices of those most affected.\n\n\nRegister for the February 9\, 2026 Ask an Advocate session here.
URL:https://www.tscalliance.org/event/ask-an-advocate-february-2026/
LOCATION:FL
CATEGORIES:Ask an Advocate Series
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/12/February-2026.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251218T190000
DTEND;TZID=America/New_York:20251218T200000
DTSTAMP:20260403T191356
CREATED:20251121T160958Z
LAST-MODIFIED:20251121T161042Z
UID:10000143-1766084400-1766088000@www.tscalliance.org
SUMMARY:2025 Transition Webinar Series - The Psychological impact on Caregivers
DESCRIPTION:Join Michele D. Della Costa\, MS\, LMFT-QS\, on Thursday\, December 18\, 2025 at 7:00 pm ET as she leads a valuable discussion on the psychological impact on caregivers of semi-independent and dependent adults with TSC. This conversation will offer practical advice on navigating the mental burden of managing care for a loved one with TSC\, including how to prevent burnout and create space for self-care. \nREGISTER HERE \nThe Transition Webinar Series is co-hosted by Mass General Brigham and the Herscot Center for TSC\, and presented by Jazz Pharmaceuticals\, Nobelpharma and Upsher-Smith Laboratories\, LLC.
URL:https://www.tscalliance.org/event/2025-transition-webinar-series-the-psychological-impact-on-caregivers-2/
LOCATION:FL
CATEGORIES:Transition Workshop,Transition Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2025/10/2025TransitionWebinarSeriesLogo-FinalRev02-25-1.jpg
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251208T200000
DTEND;TZID=America/New_York:20251208T210000
DTSTAMP:20260403T191356
CREATED:20250812T172002Z
LAST-MODIFIED:20251202T195646Z
UID:10000137-1765224000-1765227600@www.tscalliance.org
SUMMARY:Ask an Advocate
DESCRIPTION:Join us on Monday\, December 8\, 2025 at 8 pm ET for an Ask an Advocate session. Topic: Open Forum. \nRegister for the December 8\, 2025 Ask an Advocate session here.
URL:https://www.tscalliance.org/event/ask-an-advocate-5/
LOCATION:FL
CATEGORIES:Ask an Advocate Series
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251119T200000
DTEND;TZID=America/New_York:20251119T210000
DTSTAMP:20260403T191356
CREATED:20241219T170719Z
LAST-MODIFIED:20251030T193749Z
UID:10000097-1763582400-1763586000@www.tscalliance.org
SUMMARY:Adult Topic Call
DESCRIPTION:Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. The November Topic Call will feature Dean Aguiar\, PhD\, Vice President of Translational Research at the TSC Alliance. Dean will provide an update on the current state of TSC research\, including key initiatives like Anya’s Accelerator and Quality Improvement Initiatives\, along with other exciting developments. This is a great opportunity to stay informed on current research efforts at the TSC Alliance\, ask questions\, learn how you can get involved\, and engage with other adults in the TSC community. \nThese calls are hosted on the third Wednesday of September\, October\, November\, March\, April and May. You can join using your computer or dial in on the phone. You MUST register in advance to participate in a call. \nRegister for the November 19\, 2025 Topic Call here.
URL:https://www.tscalliance.org/event/adult-topic-call-7/
LOCATION:
CATEGORIES:Adult Topic Calls
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/November-2025-ATC-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251113T180000
DTEND;TZID=America/New_York:20251113T190000
DTSTAMP:20260403T191356
CREATED:20241218T190540Z
LAST-MODIFIED:20241218T190540Z
UID:10000091-1763056800-1763060400@www.tscalliance.org
SUMMARY:TS Canada ST Educational Series – Transitioning into adult care for TSC patients/promoting reproductive health and well-being in adolescents with TSC
DESCRIPTION:Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) will continue hosting an educational series in 2025 to empower patients and their families with knowledge and resources related to tuberous sclerosis complex (TSC). All of the symposia will be held on Zoom. A link will be sent to you after registration.
URL:https://www.tscalliance.org/event/ts-canada-st-educational-series-transitioning-into-adult-care-for-tsc-patients-promoting-reproductive-health-and-well-being-in-adolescents-with-tsc/
LOCATION:FL
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/canada-event-1.jpeg
ORGANIZER;CN="TSC Canada ST":MAILTO:TSCanadaST@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251110
DTEND;VALUE=DATE:20251112
DTSTAMP:20260403T191356
CREATED:20250422T153422Z
LAST-MODIFIED:20250605T174155Z
UID:10000129-1762732800-1762905599@www.tscalliance.org
SUMMARY:Epilepsy Awareness Day @ Disneyland® Resort
DESCRIPTION:Join us for the 13th Annual Epilepsy Awareness & Education Expo. \n📍 Disneyland Hotel\, Anaheim\, CA \n📅 November 10–11\, 2025 \nThis FREE two-day event brings together the largest gathering of epilepsy professionals\, advocates and families in the country. \nCome explore: \n\n100+ exhibitors including top epilepsy centers & providers\nCutting-edge anti-seizure meds and technologies\nNational support groups & service dog demos\n80+ expert-led presentations on diagnosis\, treatment\, surgery & more\nCME available for healthcare providers\nA Research Roundtable & tons of resources for all ages\n\nRegistration is NOW OPEN 👉 Learn more at epilepsyawarenessday.org \nRegister here
URL:https://www.tscalliance.org/event/epilepsy-awareness-day-disneyland-resort/
LOCATION:Disneyland Hotel Convention Center\, 1150 Magic Way\, Anaheim\, CA\, 92802\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2025/04/EADD-202557_Page_4.jpg
GEO:33.809202;-117.9269399
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Disneyland Hotel Convention Center 1150 Magic Way Anaheim CA 92802 United States;X-APPLE-RADIUS=500;X-TITLE=1150 Magic Way:geo:-117.9269399,33.809202
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251108T080000
DTEND;TZID=America/New_York:20251108T170000
DTSTAMP:20260403T191356
CREATED:20250303T212228Z
LAST-MODIFIED:20251022T202306Z
UID:10000115-1762588800-1762621200@www.tscalliance.org
SUMMARY:TSC Regional Conference - Los Angeles\, CA
DESCRIPTION:This one-day TSC Regional Conference will take place on Saturday\, November 8\, 2025 at the UCLA Meyer and Renee Luskin Conference Center at the UCLA Los Angeles Campus in Los Angeles\, CA\, and is aimed at individuals with tuberous sclerosis complex (TSC) and their caregivers will feature leading local researchers and clinicians specializing in TSC. The series is presented by Jazz Pharmaceuticals\, Nobelpharma and Upsher-Smith Laboratories\, LLC. \nTopics will include sessions across the lifespan of TSC\, including: \n\nResearch updates\, including upcoming clinical studies and trials for\nTSC Managing behaviors in TAND and caregiver mental health\nGenetics and family planning\nSeizure types and treatments for children and adults\nKidney and skin involvement and treatment options\n\nCheck out the agenda here. \nREGISTER HERE \nPRESENTING SPONSORS\n \n \n \nSeries SPONSORS\n\n \n \nSupporting SPONSORS\n \n\nOne Conference SPONSOR
URL:https://www.tscalliance.org/event/tsc-regional-conference-los-angeles-ca/
LOCATION:UCLA Meyer and Renee Luskin Conference Center\, 425 Westwood Plaza\, Los Angeles\, CA\, 90095\, United States
CATEGORIES:TSC Regional Conference Series
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/02/regional-conference-for-website.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:34.0693709;-118.4457082
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=UCLA Meyer and Renee Luskin Conference Center 425 Westwood Plaza Los Angeles CA 90095 United States;X-APPLE-RADIUS=500;X-TITLE=425 Westwood Plaza:geo:-118.4457082,34.0693709
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251102
DTEND;VALUE=DATE:20251103
DTSTAMP:20260403T191356
CREATED:20250908T180450Z
LAST-MODIFIED:20250908T181208Z
UID:10000140-1762041600-1762127999@www.tscalliance.org
SUMMARY:2025 TCS New York City Marathon
DESCRIPTION:The TSC Alliance is thrilled to have five Team TSC athletes participating in the 2025 TCS New York City Marathon on Sunday\, November 2\, 2025. \nThese passionate individuals will take to the streets of NYC\, raising awareness and funds to support the TSC Alliance’s mission to create a future where everyone affected by tuberous sclerosis complex (TSC) can live their fullest lives. Join us in cheering them on as they prepare for this amazing journey. \nSupport Team TSC and learn more about their training here.
URL:https://www.tscalliance.org/event/2025-tcs-new-york-city-marathon/
LOCATION:New York City\, Drum Road\, Staten Island\, New York\, 10305\, United States
CATEGORIES:Team TSC
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/05/NYCM_EventDesignation_Charity_RGB_FC.png
GEO:40.6031943;-74.0618196
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=New York City Drum Road Staten Island New York 10305 United States;X-APPLE-RADIUS=500;X-TITLE=Drum Road:geo:-74.0618196,40.6031943
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251101T110000
DTEND;TZID=America/Chicago:20251101T140000
DTSTAMP:20260403T191356
CREATED:20251015T200511Z
LAST-MODIFIED:20251021T200707Z
UID:10000141-1761994800-1762005600@www.tscalliance.org
SUMMARY:34th Annual Cookin' Up a Cure
DESCRIPTION:Thirty-four years ago\, Pamela’s son Joey had his first seizure at just six months old. It was then that their family heard the life-changing words: “Your child has Tuberous Sclerosis Complex.” Together\, they fought Joey’s battle with courage and love. Sadly\, just over a year after his diagnosis\, Joey’s little heart could no longer carry on. But his family promised him that they would continue his fight and ensure that his life’s purpose lived on.\n\n\n\n\nThe pampered chef party will begin at noon with a live auction\, raffles\, food and more at the Knights of Columbus on 732 Badger Avenue in South Milwaukee\, Wisconsin. Please contact Pam Sztukowski at pamsztukowski@gmail.com or 414.881.5276 with any questions.\n\n\n\n\nIn 2025\, they will honor that promise for the 34th time\, holding their annual auction in Joey’s memory. They carry on\, not just for Joey\, but for all the children\, parents\, grandparents\, and families who have faced the challenges of a TSC diagnosis.\n\n\n\n\nWe hope you can join us in Joey’s memory.\n\n\n\n\nCan’t attend? Please consider:\n\nDonating an item for the silent auction\nPlacing a Pampered Chef Order where 25% of all sales will be donated to the TSC Alliance: https://hubs.li/Q03Nz6_L0\nMake a donation via VENMO or Check (payable to the TSC Alliance)
URL:https://www.tscalliance.org/event/34th-annual-cookin-up-a-cure/
LOCATION:Knights of Columbus\, 723 Badger Avenue\, South Milwaukee\, WI\, 53172\, United States
CATEGORIES:Community Gatherings
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/10/Pampered-Chef-event-2025-1-1.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:42.9274902;-87.8577439
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Knights of Columbus 723 Badger Avenue South Milwaukee WI 53172 United States;X-APPLE-RADIUS=500;X-TITLE=723 Badger Avenue:geo:-87.8577439,42.9274902
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251015T200000
DTEND;TZID=America/New_York:20251015T210000
DTSTAMP:20260403T191356
CREATED:20241219T170634Z
LAST-MODIFIED:20250922T154506Z
UID:10000096-1760558400-1760562000@www.tscalliance.org
SUMMARY:Adult Topic Call
DESCRIPTION:Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. The October call will be an open forum format\, providing an opportunity to meet with other adults living with TSC and ask questions valuable to the entire group. These calls are hosted on the third Wednesday of September\, October\, November\, March\, April and May. You can join using your computer or dial in on the phone. You MUST register in advance to participate in a call. \nRegister for the October 15\, 2025 Topic Call here.
URL:https://www.tscalliance.org/event/adult-topic-call-6/
LOCATION:
CATEGORIES:Adult Topic Calls
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/September-2024-ATC-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251013T200000
DTEND;TZID=America/New_York:20251013T210000
DTSTAMP:20260403T191356
CREATED:20250812T171814Z
LAST-MODIFIED:20250812T171814Z
UID:10000136-1760385600-1760389200@www.tscalliance.org
SUMMARY:Ask an Advocate
DESCRIPTION:Join us on Monday\, October 13\, 2025 at 8 pm ET for an Ask an Advocate session. Topic TBD. \nRegister for the October 13\, 2025 Ask an Advocate session here.
URL:https://www.tscalliance.org/event/ask-an-advocate-4/
LOCATION:FL
CATEGORIES:Ask an Advocate Series
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250917T200000
DTEND;TZID=America/New_York:20250917T210000
DTSTAMP:20260403T191356
CREATED:20241219T170340Z
LAST-MODIFIED:20250819T152029Z
UID:10000095-1758139200-1758142800@www.tscalliance.org
SUMMARY:Adult Topic Call
DESCRIPTION:Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. The September Topic Call will feature Heather Radtke\, MS\, CGC from the TSC Alliance providing an overview of the Reproductive and Perinatal Health Initiative that focuses on the maternal and fetal effects of TSC before\, during and after pregnancy. \nThese calls are hosted on the third Wednesday of September\, October\, November\, March\, April and May. You can join using your computer or dial in on the phone. You MUST register in advance to participate in a call. \nRegister for the September 17\, 2025 Topic Call here.
URL:https://www.tscalliance.org/event/adult-topic-call-5/
LOCATION:
CATEGORIES:Adult Topic Calls
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/September-2025-ATC-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250911T180000
DTEND;TZID=America/New_York:20250911T190000
DTSTAMP:20260403T191356
CREATED:20241218T190217Z
LAST-MODIFIED:20241218T190330Z
UID:10000090-1757613600-1757617200@www.tscalliance.org
SUMMARY:TS Canada ST Educational Series – mTOR inhibitors and their use in TSC
DESCRIPTION:Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) will continue hosting an educational series in 2025 to empower patients and their families with knowledge and resources related to tuberous sclerosis complex (TSC). All of the symposia will be held on Zoom. A link will be sent to you after registration.
URL:https://www.tscalliance.org/event/tscanadastseries3/
LOCATION:FL
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/canada-event.jpeg
ORGANIZER;CN="TSC Canada ST":MAILTO:TSCanadaST@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250906T080000
DTEND;TZID=America/New_York:20250906T170000
DTSTAMP:20260403T191357
CREATED:20250303T204931Z
LAST-MODIFIED:20250819T150137Z
UID:10000114-1757145600-1757178000@www.tscalliance.org
SUMMARY:TSC Regional Conference - Iowa City\, IA
DESCRIPTION:This one-day TSC Regional Conference will take place on Saturday\, September 6\, 2025 at the Iowa Memorial Union at the University of Iowa in Iowa City\, IA\, and is aimed at individuals with tuberous sclerosis complex (TSC) and their caregivers will feature leading local researchers and clinicians specializing in TSC. The series is presented by Jazz Pharmaceuticals\, Nobelpharma and Upsher-Smith Laboratories\, LLC. \nTopics will include sessions across the lifespan of TSC\, including: \n\nResearch updates\, including upcoming clinical studies and trials for TSC\nManaging behaviors in TAND and caregiver mental health\nReproductive and perinatal health issues\nSeizure types and treatments for children and adults\nKidney and skin involvement and treatment options\n\nCan’t join us in person? We’ve got you covered. \nWe’re excited to offer virtual access to select sessions from the upcoming TSC Regional Conference in Iowa City — the only conference in this year’s regional series with a hybrid option. \nWhile we encourage all attendees to join us in person\, we understand that isn’t always possible. This virtual option ensures more of our community can stay connected and informed. \nIf you’re unable to attend in person\, please click the “(IA) Virtual Access Registration – TSC Regional Conference” link to sign up and be notified when Zoom links and session details become available. \nREGISTER HERE \nPRESENTING SPONSORS\n \n \n \nSeries SPONSORS\n\n \n \nSupporting SPONSORS\n \n\nOne Conference SPONSOR
URL:https://www.tscalliance.org/event/tsc-regional-conference-iowa-city-ia/
LOCATION:Iowa Memorial Union at the University of Iowa\, 125 N. Madison Street\, Iowa City\, IA\, 52242\, United States
CATEGORIES:TSC Regional Conference Series
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/02/regional-conference-for-website.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:41.6623113;-91.5393434
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Iowa Memorial Union at the University of Iowa 125 N. Madison Street Iowa City IA 52242 United States;X-APPLE-RADIUS=500;X-TITLE=125 N. Madison Street:geo:-91.5393434,41.6623113
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250821T190000
DTEND;TZID=America/New_York:20250821T200000
DTSTAMP:20260403T191357
CREATED:20250819T144907Z
LAST-MODIFIED:20250819T144907Z
UID:10000138-1755802800-1755806400@www.tscalliance.org
SUMMARY:2025 Transition Webinar Series - Navigating Social Security Benefits for Individuals with Disabilities
DESCRIPTION:Join us fro the next webinar in the 2025 Transition Webinar Series on Thursday August 21 at 7 pm ET. \nOur next webinar in our 2025 Transition Webinar Series will be Navigating Social Security Benefits for Individuals with Disabilities. Join us for an informative and practical session designed to support families in understanding and accessing Social Security benefits for individuals with disabilities. During this webinar\, information around understanding eligibility for Supplemental Security Income (SSI)\, what changes at age 18\, navigating the application and appeal process and how income and assets can affect eligibility and benefits. Whether your child is approaching adulthood or you’re beginning to explore available supports\, this session will provide clear guidance\, resources\, and next steps to help you plan for the future with confidence. \nRegister here!
URL:https://www.tscalliance.org/event/2025-transition-webinar-series-navigating-social-security-benefits-for-individuals-with-disabilities/
LOCATION:FL
CATEGORIES:Transition Webinar
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/08/August-2.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250811T200000
DTEND;TZID=America/New_York:20250811T210000
DTSTAMP:20260403T191357
CREATED:20250219T154003Z
LAST-MODIFIED:20250613T182947Z
UID:10000111-1754942400-1754946000@www.tscalliance.org
SUMMARY:Ask an Advocate
DESCRIPTION:Join us on August 11 at 8 pm ET for our Ask an Advocate call featuring the second half of a two-part series with TSC Alliance Education Peer Mentor Alexandra Dahlgren. She will explore how sensory processing impacts educational outcomes and discuss interventions tailored to different sensory processing types. Learn practical strategies to support student participation and success. Don’t miss this informative session! \nRegister here
URL:https://www.tscalliance.org/event/ask-an-advocate-2/
LOCATION:FL
CATEGORIES:Ask an Advocate Series
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250630T140000
DTEND;TZID=America/Los_Angeles:20250630T150000
DTSTAMP:20260403T191357
CREATED:20250606T170123Z
LAST-MODIFIED:20250606T170709Z
UID:10000135-1751292000-1751295600@www.tscalliance.org
SUMMARY:Power Hour: Understanding Neurodevelopmental Disorders After Epilepsy Surgery
DESCRIPTION:Join the Pediatric Epilepsy Surgery Alliance for a special webinar with Dr. Shafali Jeste\, Power Hour: Understanding Neurodevelopmental Disorders After Epilepsy Surgery\, on Monday\, June 30\, 2025\, at 2 pm PT. \nThis webinar is co-hosted by the TSC Alliance\, LGS Foundation\, and CHADD’s National Resource Center on ADHD. \nMany kids with drug-resistant epilepsy (DRE) also have challenges with learning\, behavior\, or attention—but parents are often left with more questions than answers. These issues may be part of something called a neurodevelopmental disorder (NDD). \nBut what is an NDD? How do you know if your child has one? And how do you get help? \nIn this Power Hour\, pediatric neurologist Dr. Shafali Jeste will explain NDDs in clear\, simple language. \nShe’ll cover: \n\nWhat neurodevelopmental disorders are\nHow they’re diagnosed\nHow they can overlap with epilepsy\, autism\, ADHD\, and learning delays\nHow the correct diagnosis can help unlock proper supports and services for your child\n\nThis talk is perfect for parents who are dealing with: \n\nBehavior or attention issues\nLearning delays\nTrouble getting school services or knowing what to ask for\n\nDr. Jeste will discuss how these issues may be present before epilepsy surgery\, may change after surgery\, or show up later on. Every child’s path is different—and having the right information can make a big difference. \nWho should attend? \nParents and caregivers of children with drug-resistant epilepsy (including genetic epilepsies like TSC\, Dravet\, or LGS) and ADHD\, autism\, or other neurodevelopmental disorders. \nRegister here!
URL:https://www.tscalliance.org/event/power-hour-understanding-neurodevelopmental-disorders-after-epilepsy-surgery/
LOCATION:FL
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/06/060a1ad4-1bf6-9ea6-34d2-8133fec56b4d.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250626
DTEND;VALUE=DATE:20250629
DTSTAMP:20260403T191357
CREATED:20240805T160138Z
LAST-MODIFIED:20250611T145849Z
UID:10000084-1750896000-1751155199@www.tscalliance.org
SUMMARY:2025 TSC International Research Conference
DESCRIPTION:Mark your calendars for the 2025 TSC International Research Conference\, hosted by the TSC Alliance\, scheduled for June 26-28\, 2025\, at the Bethesda North Marriott in Bethesda\, MD. The conference will focus on structured\, collaborative discussions on groundbreaking research topics. \nREGISTER HERE\n  \n Conference Co-Chairs:​  \n\nShafali Spurling Jeste\, MD\, Chief\, Division of Neurology\, Co-Director\, Neurological Institute\, Children’s Hospital\, Los Angeles​ \n\n\nCarmen Priolo​\, MD\, PhD\, Assistant Professor\, Brigham and Women’s Hospital\n \n\nOrganizing Committee Members:​  \n\nAnna Jansen\, MD\, PhD\, Professor of Child Neurology\, Antwerp University Hospital\n\n\nHoward Weiner\, MD\, Chief\, Neurosurgery\, Texas Children’s Hospital \n\n\nWilliam Stanford\, PhD\, Senior Scientist\, Regenerative Medicine\, Ottawa Hospital Research Institute  \n\n\nUchenna Unachukwu\, PhD\, Associate Research Scientist\, Columbia University \n\n\nKimberly Raab-Graham\, PhD\, Professor\, Translational Research\, Wake Forest University \n\n\nKate Richardson\, MS\, CGC\, Assistant Professor\, Division of Medical Genetics\, UTHealth Houston\, McGovern Medical School  \n\n\nRajsekar Rajaraman\, MD\, Director\, TSC Clinic\, Assistant Professor\, Pediatric Neurology\, UCLA Mattel Children’s Hospital\n\nIn addition\, the conference will provide a platform for early-career researchers to present\, share and network with senior investigators. \nCheck out the conference agenda here.  \nREGISTER HERE
URL:https://www.tscalliance.org/event/2025-international-tsc-research-conference/
LOCATION:Bethesda North Marriott\, 5701 Marinelli Rd\, Rockville\, MD\, 20852\, United States
CATEGORIES:Research Conference
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2024/08/IRC-news-tile.png
GEO:39.0470655;-77.1153354
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Bethesda North Marriott 5701 Marinelli Rd Rockville MD 20852 United States;X-APPLE-RADIUS=500;X-TITLE=5701 Marinelli Rd:geo:-77.1153354,39.0470655
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/North_Dakota/Center:20250621T090000
DTEND;TZID=America/North_Dakota/Center:20250621T140000
DTSTAMP:20260403T191357
CREATED:20250506T144626Z
LAST-MODIFIED:20250509T142148Z
UID:10000130-1750496400-1750514400@www.tscalliance.org
SUMMARY:TSC Family Education Day 2025
DESCRIPTION:Join the Children’s Mercy Tuberous Sclerosis Complex (TSC) Clinic in Kansas City\, MO for a TSC Education Day on Saturday\, June 21\, 2025 at the Kansas City Zoo from 9 am to 2 pm CT. This event is designed to provide support\, education and resources to individuals and families affected by TSC\, as well as healthcare professionals and advocates. \nThis Family Education Day will feature: \n\nContinental breakfast and provided lunch\nInteractive breakout sessions on practical skills for TSC patients and families\n\nKeynote speakers: \n\nDr. Tanjala Trine Gipson\nJulie Cleary-Dillion\n\nRSVP to the event here. \nPlease contact Rajanna (RJ) Brooks\, LPN via email at rrbrooks@cmh.edu if you have any questions.
URL:https://www.tscalliance.org/event/tsc-family-education-day-2025/
LOCATION:Kansas City Zoo\, 6800 Zoo Dr\, Kansas City\, MO\, 64132\, United States
CATEGORIES:Community Gatherings
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2025/05/25-NEUR-3230_Tuberous-sclerosis-Complex-Family-Ed-Day-Save-the-Date_digital_JT.jpg
GEO:39.0068854;-94.5291942
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Kansas City Zoo 6800 Zoo Dr Kansas City MO 64132 United States;X-APPLE-RADIUS=500;X-TITLE=6800 Zoo Dr:geo:-94.5291942,39.0068854
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250617T190000
DTEND;TZID=America/New_York:20250617T200000
DTSTAMP:20260403T191357
CREATED:20250520T190702Z
LAST-MODIFIED:20250520T190906Z
UID:10000134-1750186800-1750190400@www.tscalliance.org
SUMMARY:2025 Transition Webinar Series - Maximizing Independence and Financial Security: A Comprehensive Guide to ABLE Accounts for Individuals with Disabilities
DESCRIPTION:Join the TSC Alliance for the third webinar of the 2025 Transition Webinar Series! \nThis webinar will take place on Tuesday\, June 17\, 2025 at 7 pm ET. This webinar will feature Kelly Piacenti\, MA\, ChSNC\, a Chartered Special Needs Consultant® from MassMutual SpecialCare and Jerry L. Hulick\, CLU\, ChFC\, ChSNC\, CLTC from The Washington Group Special Care Planning Team to discuss Maximizing Independence and Financial Security: A Comprehensive Guide to ABLE Accounts for Individuals with Disabilities. \nWhat is an ABLE Account? \nAn ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account and an important tool for qualified individuals with disabilities\, offering additional independence and financial security. \nThis workshop provides essential information on ABLE accounts which grow tax-free and can be invested while still preserving valuable needs-based government benefits for the account owner. \nKelly and Jerry will cover how individuals who are working can make additional contributions from wages to their ABLE account. You will also learn how funds in an ABLE account can cover an expanding wide range of qualified expenses and ways it can work with special needs trusts as part of a comprehensive planning strategy. The ease\, access and low cost of ABLE accounts make them a great choice for millions of individuals with disabilities. \nLearn more about this webinar and register below! \nREGISTER HERE \n 
URL:https://www.tscalliance.org/event/2025-transition-webinar-series-maximizing-independence-and-financial-security-a-comprehensive-guide-to-able-accounts-for-individuals-with-disabilities/
LOCATION:FL
CATEGORIES:Transition Webinar
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/05/6725.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250612T180000
DTEND;TZID=America/New_York:20250612T190000
DTSTAMP:20260403T191357
CREATED:20241218T185534Z
LAST-MODIFIED:20241218T185534Z
UID:10000089-1749751200-1749754800@www.tscalliance.org
SUMMARY:TS Canada ST Educational Series – Strategies for ASD and behavior in tuberous sclerosis complex
DESCRIPTION:Tuberous Sclerosis Canada Sclérose Tubéreuse (TSC Canada ST) will continue hosting an educational series in 2025 to empower patients and their families with knowledge and resources related to tuberous sclerosis complex (TSC). All of the symposia will be held on Zoom. A link will be sent to you after registration.
URL:https://www.tscalliance.org/event/ts-canada-st-educational-series-strategies-for-asd-and-behavior-in-tuberous-sclerosis-complex/
LOCATION:FL
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/canada-event-1.jpeg
ORGANIZER;CN="TSC Canada ST":MAILTO:TSCanadaST@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250609T200000
DTEND;TZID=America/New_York:20250609T210000
DTSTAMP:20260403T191357
CREATED:20250219T153834Z
LAST-MODIFIED:20250519T183118Z
UID:10000110-1749499200-1749502800@www.tscalliance.org
SUMMARY:Ask an Advocate
DESCRIPTION:Join us on June 9 at 8 pm ET for Ask an Advocate\, featuring the first of a two-part series with TSC Alliance Education Peer Mentor Alexandra Dahlgren. She will discuss sensory processing and the four main sensory processing patterns\, helping students\, families and advocates better understand how sensory differences impact learning and daily life. Don’t miss this opportunity to gain valuable insights and practical strategies! The second part of Alexandra’s presentation will be at our next Ask an Advocate session on August 11. \nRegister here
URL:https://www.tscalliance.org/event/ask-an-advocate/
LOCATION:FL
CATEGORIES:Ask an Advocate Series
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/02/June-2025.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250607T100000
DTEND;TZID=UTC:20250607T130000
DTSTAMP:20260403T191357
CREATED:20250212T221816Z
LAST-MODIFIED:20250212T221816Z
UID:10000107-1749290400-1749301200@www.tscalliance.org
SUMMARY:Step Forward to Cure TSC® - Pleasant View\, UT
DESCRIPTION:We’re thrilled to announce that Step Forward to Cure TSC® is coming to the Pleasant View\, UT area on Saturday\, June 7\, 2025! This exciting event\, hosted by the TSC Alliance\, is a chance for the Utah area TSC community to come together\, raise awareness and support the fight against tuberous sclerosis complex (TSC). Step forward to champion the TSC Alliance’s efforts to fund groundbreaking research\, offer critically needed support programs and increase awareness of TSC.⁠ You can create a team\, join an existing team\, register as an individual or donate in honor of someone you care about. \nEvent Details: \n\nSaturday\, June 7\, 2025\n\n\nWheeler Farm Outdoor Education Center and 5K Track: 6351 South 900 East\, Murray\, UT 84121\n\nThis free\, family-friendly event is an opportunity to walk\, run\, or ride while connecting with other TSC families\, clinicians\, and advocates as we work toward creating a better future for everyone affected by TSC. \nCan’t make it in person? Join virtually from our “Step Forward Join Anywhere” page! \nRegister today!
URL:https://www.tscalliance.org/event/step-forward-to-cure-tsc-pleasant-view-ut/
LOCATION:Wheeler Farm Outdoor Education Ctr and 5K Track\, 6351 South 900\, East Murray\,\, UT\, 84121
CATEGORIES:Step Forward to Cure TSC Walk-Run-Ride,Step Forward to Cure TSC
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/02/Salt-Lake-City-UT.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:40.7606608;-111.8939487
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Wheeler Farm Outdoor Education Ctr and 5K Track 6351 South 900 East Murray UT 84121;X-APPLE-RADIUS=500;X-TITLE=6351 South 900:geo:-111.8939487,40.7606608
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250607T090000
DTEND;TZID=America/New_York:20250607T150000
DTSTAMP:20260403T191357
CREATED:20250324T153320Z
LAST-MODIFIED:20250324T153320Z
UID:10000120-1749286800-1749308400@www.tscalliance.org
SUMMARY:Step Forward to Cure TSC® – Harbor City\, CA
DESCRIPTION:Join us for Step Forward to Cure TSC® in Harbor City\, CA on Saturday\, June 7\, 2025! This exciting event\, hosted by the TSC Alliance\, is a chance for the Southern California TSC community to come together\, raise awareness and support the fight against tuberous sclerosis complex (TSC). Step forward to champion the TSC Alliance’s efforts to fund groundbreaking research\, offer critically needed support programs and increase awareness of TSC.⁠ You can create a team\, join an existing team\, register as an individual or donate in honor of someone you care about. \nEvent Details: \n\nSaturday\, June 7\, 2025 @ 9 am PT\n\n\nKen Malloy Harbor Regional Park: 25820 Vermont Ave\, Harbor City\, CA 90710\n\nThis free\, family-friendly event is an opportunity to walk\, run\, or ride while connecting with other TSC families\, clinicians\, and advocates as we work toward creating a better future for everyone affected by TSC. \nCan’t make it in person? Join virtually from our “Step Forward Join Anywhere” page! \nRegister today!
URL:https://www.tscalliance.org/event/step-forward-to-cure-tsc-harbor-city-ca/
LOCATION:Ken Malloy Harbor Regional Park\, 25820 Vermont Ave\, Harbor City\, CA\, 90710\, United States
CATEGORIES:Step Forward to Cure TSC Walk-Run-Ride,Step Forward to Cure TSC
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/03/Harbor-City-CA.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:33.7834911;-118.2948451
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Ken Malloy Harbor Regional Park 25820 Vermont Ave Harbor City CA 90710 United States;X-APPLE-RADIUS=500;X-TITLE=25820 Vermont Ave:geo:-118.2948451,33.7834911
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250531T100000
DTEND;TZID=America/New_York:20250531T134500
DTSTAMP:20260403T191357
CREATED:20250324T153827Z
LAST-MODIFIED:20250521T183258Z
UID:10000121-1748685600-1748699100@www.tscalliance.org
SUMMARY:Step Forward to Cure TSC® - Denver\, CO
DESCRIPTION:Join us for Step Forward to Cure TSC® in Denver\, CO on Saturday\, May 31\, 2025! This exciting event\, hosted by the TSC Alliance\, is a chance for the Colorado area TSC community to come together\, raise awareness and support the fight against tuberous sclerosis complex (TSC). Step forward to champion the TSC Alliance’s efforts to fund groundbreaking research\, offer critically needed support programs and increase awareness of TSC.⁠ You can create a team\, join an existing team\, register as an individual or donate in honor of someone you care about. \nEvent Details: \n\nSaturday\, May 31\, 2025 @10 am MT\n\n\nE.B. Rains Jr. Memorial Park: 11701 Community Center Dr\, Northglenn\, CO 80233\n\nThis free\, family-friendly event is an opportunity to walk\, run\, or ride while connecting with other TSC families\, clinicians\, and advocates as we work toward creating a better future for everyone affected by TSC. \nCan’t make it in person? Join virtually from our “Step Forward Join Anywhere” page! \nRegister today!
URL:https://www.tscalliance.org/event/step-forward-to-cure-tsc-denver-co/
LOCATION:E.B. Rains Jr. Memorial Park\, Community Center Drive\, Northglenn\, CO\, 80233\, United States
CATEGORIES:Step Forward to Cure TSC Walk-Run-Ride,Step Forward to Cure TSC
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/03/Denver-CO.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:39.9095875;-104.9883856
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=E.B. Rains Jr. Memorial Park Community Center Drive Northglenn CO 80233 United States;X-APPLE-RADIUS=500;X-TITLE=Community Center Drive:geo:-104.9883856,39.9095875
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250524T083000
DTEND;TZID=America/New_York:20250524T140000
DTSTAMP:20260403T191357
CREATED:20250212T222221Z
LAST-MODIFIED:20250521T182948Z
UID:10000108-1748075400-1748095200@www.tscalliance.org
SUMMARY:Step Forward to Cure TSC® - Tampa\, FL
DESCRIPTION:We’re thrilled to announce that Step Forward to Cure TSC® is coming to Tampa\, FL on Saturday\, May 24\, 2025! This exciting event\, hosted by the TSC Alliance\, is a chance for the Florida area TSC community to come together\, raise awareness and support the fight against tuberous sclerosis complex (TSC). Step forward to champion the TSC Alliance’s efforts to fund groundbreaking research\, offer critically needed support programs and increase awareness of TSC.⁠ You can create a team\, join an existing team\, register as an individual or donate in honor of someone you care about. \nEvent Details: \n\nSaturday\, May 24\, 2025\n\n\nMacFarlane Park: 1700 N. MacDill Ave\, Tampa\, FL 33607\n\nThis free\, family-friendly event is an opportunity to walk\, run\, or ride while connecting with other TSC families\, clinicians\, and advocates as we work toward creating a better future for everyone affected by TSC. \nCan’t make it in person? Join virtually from our “Step Forward Join Anywhere” page! \nRegister today!
URL:https://www.tscalliance.org/event/step-forward-to-cure-tsc-tampa-fl/
LOCATION:MacFarlane Park\, 1700 N. MacDill Ave\, Tampa\, FL\, 33607\, United States
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/02/Tampa-FL.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:27.9585168;-82.4952517
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=MacFarlane Park 1700 N. MacDill Ave Tampa FL 33607 United States;X-APPLE-RADIUS=500;X-TITLE=1700 N. MacDill Ave:geo:-82.4952517,27.9585168
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250521T200000
DTEND;TZID=America/New_York:20250521T210000
DTSTAMP:20260403T191357
CREATED:20241219T165941Z
LAST-MODIFIED:20250519T182722Z
UID:10000094-1747857600-1747861200@www.tscalliance.org
SUMMARY:Adult Topic Call
DESCRIPTION:Adult topic calls provide a forum for independent or semi-independent adults with TSC to connect with other adults via Zoom and learn from experts on a wide array of relevant issues. These calls are hosted on the third Wednesday of September\, October\, November\, March\, April and May. You can join using your computer or dial in on the phone. You MUST register in advance to participate in a call. \nRegister for the May 21\, 2025 Topic Call here.
URL:https://www.tscalliance.org/event/adult-topic-call-4/
LOCATION:
CATEGORIES:Adult Topic Calls
ATTACH;FMTTYPE=image/jpeg:https://www.tscalliance.org/wp-content/uploads/2024/12/May-2025-ATC.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250518T093000
DTEND;TZID=America/New_York:20250518T153000
DTSTAMP:20260403T191357
CREATED:20250324T155804Z
LAST-MODIFIED:20250324T155804Z
UID:10000124-1747560600-1747582200@www.tscalliance.org
SUMMARY:Step Forward to Cure TSC® - Rockville\, MD
DESCRIPTION:Join us for Step Forward to Cure TSC® in Rockville\, MD on Sunday\, May 18\, 2025! This exciting event\, hosted by the TSC Alliance\, is a chance for the Maryland area TSC community to come together\, raise awareness and support the fight against tuberous sclerosis complex (TSC). Step forward to champion the TSC Alliance’s efforts to fund groundbreaking research\, offer critically needed support programs and increase awareness of TSC.⁠ You can create a team\, join an existing team\, register as an individual or donate in honor of someone you care about. \nEvent Details: \n\nSunday\, May 18\, 2025 @ 9:30 am ET\n\n\nCharles E. Smith Jewish Day School: 11710 Hunters Lane\, Rockville\, MD 20852\n\nThis free\, family-friendly event is an opportunity to walk\, run\, or ride while connecting with other TSC families\, clinicians\, and advocates as we work toward creating a better future for everyone affected by TSC. \nCan’t make it in person? Join virtually from our “Step Forward Join Anywhere” page! \nRegister today!
URL:https://www.tscalliance.org/event/step-forward-to-cure-tsc-rockville-md/
LOCATION:Charles E. Smith Jewish Day School\, Hunters Lane\, Rockville\, MD\, 20852\, United States
CATEGORIES:Step Forward to Cure TSC Walk-Run-Ride,Step Forward to Cure TSC
ATTACH;FMTTYPE=image/png:https://www.tscalliance.org/wp-content/uploads/2025/03/Rockville-MD.png
ORGANIZER;CN="TSC Alliance":MAILTO:info@tscalliance.org
GEO:39.0494131;-77.1001988
X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Charles E. Smith Jewish Day School Hunters Lane Rockville MD 20852 United States;X-APPLE-RADIUS=500;X-TITLE=Hunters Lane:geo:-77.1001988,39.0494131
END:VEVENT
END:VCALENDAR