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X-ORIGINAL-URL:https://www.nfnortheast.org
X-WR-CALDESC:Events for Neurofibromatosis Northeast
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TZID:America/New_York
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250301T180000
DTEND;TZID=America/New_York:20250301T200000
DTSTAMP:20260404T041813
CREATED:20250225T110157Z
LAST-MODIFIED:20250304T190949Z
UID:2822-1740852000-1740859200@www.nfnortheast.org
SUMMARY:Hartford NF Meet Up
DESCRIPTION:Join NF Northeast for a free and fun Hartford NF Meet Up! Meet other NF patients and connect over food\, drinks and fun at Cheshire Craft Brewing! Food and drink will be available for purchase.  Bring the family – we hope to see you there! \nWhat: NF Northeast Hartford Family Night Meet Up \nWhen: Saturday\, March 1 @ 6PM \nWhere: Cheshire Craft Brewing – Cheshire\, CT \nQuestions?  Contact Sara-Jane Griffin.
URL:https://www.nfnortheast.org/event/hartford-nf-meet-up/
LOCATION:Cheshire Craft Brewing\, 125 Commerce Ct STE 7\, Cheshire\, CT\, 06410\, United States
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/02/HARTFORD.png
ORGANIZER;CN="Sara-Jane Griffin":MAILTO:sjgriffin@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250309T140000
DTEND;TZID=America/New_York:20250309T170000
DTSTAMP:20260404T041813
CREATED:20250224T180612Z
LAST-MODIFIED:20250311T152445Z
UID:2814-1741528800-1741539600@www.nfnortheast.org
SUMMARY:Western NY NF Meet Up
DESCRIPTION:Join NF Northeast for a WNY NF Meet Up! Meet other NF patients and connect over food\, drinks and fun at Resurgence Brewery in Buffalo\, NY! \nWhat: NF Northeast WNY Meet Up \nWhen: Sunday\, March 9 @ 2PM – 5PM \nWhere: Resurgence Brewery (55 Chicago Street\, Buffalo) \nQuestions?  Contact Anne Patterson
URL:https://www.nfnortheast.org/event/western-ny-nf-meet-up/
LOCATION:Resurgence Brewery\, 55 Chicago Street\, Buffalo\, NY\, 14204
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/02/Buffalo-3.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250311T120000
DTEND;TZID=America/New_York:20250311T130000
DTSTAMP:20260404T041813
CREATED:20250129T202836Z
LAST-MODIFIED:20250311T164816Z
UID:2703-1741694400-1741698000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways with Dr. Frank Buono
DESCRIPTION:Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nAre you interested in learning more about managing chronic pain? Many individuals who live with neurofibromatosis (NF) also live with chronic pain. Dr. Frank Buono\, a Research Scientist and Lecturer at the Yale School of Medicine\, will shed light on the different aspects of pain and strategies to help individuals cope with the challenges of pain management. Join us to learn more about the ‘I Can Cope NF’ App\, alternative pain management strategies\, the importance of self-advocacy\, and much more! \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-with-frank-buono/
LOCATION:Zoom
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/01/March-2025-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250311T190000
DTEND;TZID=America/New_York:20250311T200000
DTSTAMP:20260404T041813
CREATED:20250108T003926Z
LAST-MODIFIED:20250312T034725Z
UID:2484-1741719600-1741723200@www.nfnortheast.org
SUMMARY:NF Community Chat - March
DESCRIPTION:NF patients and their families/friends are invited to join us the evening of Tuesday\, March 11th at 7pm for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-chat-march25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/01/March-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250322T140000
DTEND;TZID=America/New_York:20250322T170000
DTSTAMP:20260404T041813
CREATED:20250211T131951Z
LAST-MODIFIED:20250325T144152Z
UID:2763-1742652000-1742662800@www.nfnortheast.org
SUMMARY:NYC NF Meet Up
DESCRIPTION:Join NF Northeast for a NYC NF Meet Up! Meet other NF patients and connect over food\, drinks and fun at Clinton Hall on 51st Street. We hope to see you there! \nWhat: NF Northeast NYC Meet Up \nWhen: Saturday\, March 22 @ 2PM \nWhere: Clinton Hall (51st Street location) \nQuestions?  Contact Lauren Gilbert
URL:https://www.nfnortheast.org/event/nyc-nf-meet-up/
LOCATION:Clinton Hall\, 230 E. 51st St.\, New York\, NY\, 10022
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/02/Greater-Boston-2-2.png
ORGANIZER;CN="Lauren Gilbert":MAILTO:lgilbert@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250329T103000
DTEND;TZID=America/New_York:20250329T123000
DTSTAMP:20260404T041813
CREATED:20250130T030114Z
LAST-MODIFIED:20250402T173235Z
UID:2706-1743244200-1743251400@www.nfnortheast.org
SUMMARY:Support and Tools for NF1 Caregivers
DESCRIPTION:Join NF Northeast for an educational event designed to support and connect caregivers of individuals with neurofibromatosis type 1 (NF1). This seminar will provide valuable resources\, insights\, and a sense of community for those caring for loved ones with NF1. This workshop is designed for adult caregivers\, offering expert guidance and shared experiences to navigate the challenges of NF1 care. There will be a Q&A session where caregivers will have an opportunity to ask our speakers any questions they have. \nDate: Saturday\, March 29th\nTime: 10:30am – 12:30pm\nLocation: Katonah Village Library in Katonah\, NY (Westchester County) \nRegister Here \nSpeakers: \n\nGurcharanjeet Kaur\, MD – Pediatric Neurology\, Columbia University Irving Medical Center\nAmanda L. Bergner\, MS\, LCGC – Genetic Counseling\, Columbia University Irving Medical Center\nJeffrey Malone\, LMHC – Mental Health Counselor\n\nFor caregivers attending with children\, an onsite activity will be available for kids ages 6-11. \nAdvance registration is encouraged\, but walk-ins are welcome as space allows. \nThank you to our sponsor:
URL:https://www.nfnortheast.org/event/support-and-tools-for-nf1-caregivers/
LOCATION:Katonah Village Library\, 26 Bedford Rd\, Katonah\, NY\, 10536\, United States
CATEGORIES:Community,Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/01/NF1-Caregiver_WEB.png
ORGANIZER;CN="Allison D%E2%80%99Ottavio":MAILTO:adottavio@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250405T100000
DTEND;TZID=America/New_York:20250405T140000
DTSTAMP:20260404T041813
CREATED:20250306T224313Z
LAST-MODIFIED:20250408T154002Z
UID:2840-1743847200-1743861600@www.nfnortheast.org
SUMMARY:Neurofibromatosis Educational Symposium
DESCRIPTION:Join us for the Neurofibromatosis Educational Symposium on Saturday\, April 5th\, from 10:00 AM to 2:00 PM in Buffalo\, NY. Hosted by John R. Oishei Children’s Hospital\, Roswell Park Cancer Institute\, and UBMD Pediatrics\, this event will provide valuable insights into neurofibromatosis\, featuring expert speakers and discussions. \n📍 Location: Conventus\, Alford Auditorium (2nd Floor)\, 1001 Main Street\, Buffalo\, NY 14203 \nDon’t miss this opportunity to learn\, connect\, and engage with professionals and individuals affected by neurofibromatosis! \nRegister Here
URL:https://www.nfnortheast.org/event/neurofibromatosis-educational-symposium/
LOCATION:Conventus\, Alford Auditorium (2nd Floor)\,1001 Main Street\, Buffalo\, NY\, 14203\, United States
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-06-at-17-41-08-Neurofibromatosis-Educational-Symposium-Tickets-Sat-Apr-5-2025-at-10-00-AM-Eventbrite.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250422T120000
DTEND;TZID=America/New_York:20250422T130000
DTSTAMP:20260404T041813
CREATED:20250402T193333Z
LAST-MODIFIED:20250423T164223Z
UID:2931-1745323200-1745326800@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session with Mike Sager: Advocating for Your Child
DESCRIPTION:Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor the third session of our Spring 2025 Tuesday Takeaways series\, we welcome Mike Sager\, Patient Education Manager with Alexion Pharmaceuticals! Are you a parent or caregiver for a child/loved one with neurofibromatosis? Mike will share helpful resources and strategies to advocate for those we care for while engaging with their medical team and beyond. \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-with-mike-sager-2/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/04/April-2025-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250426T090000
DTEND;TZID=America/New_York:20250426T100000
DTSTAMP:20260404T041813
CREATED:20250108T004146Z
LAST-MODIFIED:20250429T143011Z
UID:2487-1745658000-1745661600@www.nfnortheast.org
SUMMARY:NF Community Chat - April
DESCRIPTION:NF patients and their families/friends are invited to join us the morning of Saturday\, April 26th at 9am for a community-building virtual coffee chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-chat-april25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/01/April-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250510T110000
DTEND;TZID=America/New_York:20250510T170000
DTSTAMP:20260404T041813
CREATED:20250307T001803Z
LAST-MODIFIED:20250513T173530Z
UID:2854-1746874800-1746896400@www.nfnortheast.org
SUMMARY:2025 Patient and Family Neurofibromatosis and Schwannomatosis Symposium
DESCRIPTION:Join us on Saturday\, May 10th\, 2025\, from 11:00 AM to 5:00 PM for the 2025 Patient and Family Neurofibromatosis & Schwannomatosis Symposium in Boston\, MA. Hosted by Massachusetts General Hospital in collaboration with Boston Children’s Hospital’s Neurofibromatosis Program\, this event will feature expert discussions\, the latest research updates\, and resources for patients and families affected by neurofibromatosis and schwannomatosis. \nLocation: Simches Research Center\, MGH\, Boston\, MA\nParking: Charles River Park Garage\, 207 Cambridge Street\, Boston\, MA 02114 \nDon’t miss this chance to learn from experts\, connect with the community\, and access valuable resources! \nRegister Here
URL:https://www.nfnortheast.org/event/2025-patient-and-family-neurofibromatosis-and-schwannomatosis-symposium/
LOCATION:Simches Research Center\, 185 Cambridge Street\, Boston\, MA\, 02114\, United States
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-06-at-19-09-23-2025-Patient-and-Family-Neurofibromatosis-and-Schwannomatosis-Symposium-Tickets-Sat-May-10-2025-at-11-00-AM-Eventbrite.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250514T163000
DTEND;TZID=America/New_York:20250514T193000
DTSTAMP:20260404T041813
CREATED:20250205T143406Z
LAST-MODIFIED:20250520T144310Z
UID:2155-1747240200-1747251000@www.nfnortheast.org
SUMMARY:A Reason for 'Ritas: A Charitable Evening to Benefit NF Northeast
DESCRIPTION:Join us to celebrate NF Northeast with good food\, better drinks\, and the best people at Margaritaville Boston on Wednesday\, May 14! We’ll be hosting an unforgettable tropical evening at Margaritaville Boston\, located in the Faneuil Hall Marketplace in downtown Boston\, with appetizers\, beer & wine\, and lots of margaritas. \nPurchase Event Tickets \nDon’t miss out on our luxury trip auction\, where we’ll be awarding the highest bidder with a stunning 13-day river cruise on the Seine for two! This two-week long cruise from Paris to Normandy includes airfare from Boston\, MA with departure on August 4\, 2025 (major thanks to Grand Circle Travel for their generous trip donation). You can place your bids in advance and of course\, join the live action at the event. Learn more about this exciting auction item HERE.  Place your bid from advance (or afar) through our auction website below. \nLuxury Trip Auction Details / Place Your Bid \nThis event is open to everyone\, so gather your friends\, don your best tropical attire\, and escape into the island vibes in support of NF Northeast 🌴🌺🍹 \n  \nThank you to our sponsors:
URL:https://www.nfnortheast.org/event/a-reason-for-ritas-a-celebration-of-nf-northeast-at-margaritaville/
LOCATION:Margaritaville Boston\, 399-400 Faneuil Hall Marketplace\, Faneuil Hall Sq\, Boston\, MA\, 02109\, United States
CATEGORIES:Community,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/06/Reason-for-Ritas.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250520T120000
DTEND;TZID=America/New_York:20250520T130000
DTSTAMP:20260404T041813
CREATED:20250513T204252Z
LAST-MODIFIED:20250520T231955Z
UID:3001-1747742400-1747746000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session: Spotlight on NF Clinics in the Northeast
DESCRIPTION:Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nJoin us during NF Awareness Month to learn about the NF centers of excellence in our region. In addition to general information about the NF clinics and providers available throughout the northeast\, NF providers from Columbia University Irving Medical Center (CUIMC) and the UPMC Children’s Hospital of Pittsburgh NF clinics will share details about their clinical teams and NF programs. \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/spotlight-nf-clinics-northeast/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/05/May-2025-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250520T190000
DTEND;TZID=America/New_York:20250520T200000
DTSTAMP:20260404T041813
CREATED:20250108T005257Z
LAST-MODIFIED:20250520T232004Z
UID:2490-1747767600-1747771200@www.nfnortheast.org
SUMMARY:NF Community Chat - May
DESCRIPTION:NF patients and their families/friends are invited to join us the evening of Tuesday\, May 20th at 7pm for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-chat-may25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/01/May-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250525T070000
DTEND;TZID=America/New_York:20250525T100000
DTSTAMP:20260404T041813
CREATED:20250331T232125Z
LAST-MODIFIED:20250527T191210Z
UID:2904-1748156400-1748167200@www.nfnortheast.org
SUMMARY:Boston's Run to Remember
DESCRIPTION:Run Boston’s Run to Remember for NF Northeast! \nTake on the Boston’s Run to Remember Half Marathon or 5-Miler and make your miles matter! This inspiring race honors fallen first responders while giving you the chance to support NF Northeast. \nWhether you’re running 5 miles or going the full 13.1\, you can raise awareness and funds for those affected by neurofibromatosis (NF). Join our team\, challenge yourself\, and make a difference—one step at a time! \nReady to run for a cause? Sign up today and be part of something bigger! \nFor more information\, contact Kim Trainor at ktrainor@nfnortheast.org
URL:https://www.nfnortheast.org/event/bostons-run-to-remember/
LOCATION:Seaport Boston\, Seaport Blvd\, Boston\, Massachusetts
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-31-at-19-20-26-r2r_logo_23.png-PNG-Image-200-×-182-pixels.png
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250525T071500
DTEND;TZID=America/New_York:20250525T150000
DTSTAMP:20260404T041813
CREATED:20250331T231103Z
LAST-MODIFIED:20250527T191214Z
UID:2893-1748157300-1748185200@www.nfnortheast.org
SUMMARY:Vermont City Marathon and Relay
DESCRIPTION:Run the Vermont City Marathon & Relay for NF Northeast! \nJoin us for the Vermont City Marathon & Relay and run for a cause! Whether you’re tackling the full 26.2 miles or teaming up for the relay\, you can make every step count by supporting NF Northeast. \nBy running with us\, you’ll help raise awareness and funds for those affected by neurofibromatosis (NF). Plus\, you’ll be part of an incredible community of runners making a difference. \nReady to run for a purpose? Sign up today and let’s cross the finish line together for NF Northeast! \nFor more information\, contact Kim Trainor at ktrainor@nfnortheast.org
URL:https://www.nfnortheast.org/event/vermont-city-marathon-and-relay/
LOCATION:Waterfront Park\, 20 Lake Street\, Burlington\, VT\, 05401
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-31-at-19-09-05-MT-Bank-Vermont-City-Marathon-Relay-RunVermont.png
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250617T190000
DTEND;TZID=America/New_York:20250617T200000
DTSTAMP:20260404T041813
CREATED:20250603T181005Z
LAST-MODIFIED:20250625T183514Z
UID:3025-1750186800-1750190400@www.nfnortheast.org
SUMMARY:NF Community Chat - June
DESCRIPTION:NF patients and their families/friends are invited to join us the evening of Tuesday\, June 17th at 7pm for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-community-chat-june25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/06/June-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250624T120000
DTEND;TZID=America/New_York:20250624T130000
DTSTAMP:20260404T041813
CREATED:20250617T172158Z
LAST-MODIFIED:20250625T183519Z
UID:3060-1750766400-1750770000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session with Mike Sager: Transitioning to Early Adulthood
DESCRIPTION:Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor the final session of our Spring 2025 Tuesday Takeaways series\, we turn our focus to transitioning into early adulthood NF care. Is someone you care for looking to transfer from a pediatric to an adult NF healthcare provider? Mike Sager\, Patient Education Manager from Alexion Pharmaceuticals\, will share information about transitioning to adult care. \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-early-adulthood/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/06/June-2025-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250715T190000
DTEND;TZID=America/New_York:20250715T200000
DTSTAMP:20260404T041813
CREATED:20250603T181451Z
LAST-MODIFIED:20250715T231729Z
UID:3032-1752606000-1752609600@www.nfnortheast.org
SUMMARY:NF Community Coffee Chat - July
DESCRIPTION:NF patients and their families/friends are invited to join us the evening of Tuesday\, July 15th at 7pm for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-community-chat-july25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/06/July-25-1.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250812T120000
DTEND;TZID=America/New_York:20250812T130000
DTSTAMP:20260404T041813
CREATED:20250715T231657Z
LAST-MODIFIED:20250813T185313Z
UID:3193-1755000000-1755003600@www.nfnortheast.org
SUMMARY:Tuesday Takeaways with Mike Sager: Productive Conversations with Healthcare Providers
DESCRIPTION:Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor the final session of our Spring/Summer 2025 Tuesday Takeaways series\, we turn our focus to advocating successfully with healthcare providers. Creating productive conversations with physicians and other members of your medical care team is incredibly important. Mike Sager\, Patient Education Manager at Alexion\, will describe the various components of productive conversations you can use at upcoming medical appointments. \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-productive-convos-healthcare-providers/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/07/August-2025-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250814T190000
DTEND;TZID=America/New_York:20250814T200000
DTSTAMP:20260404T041813
CREATED:20250603T181223Z
LAST-MODIFIED:20250819T143524Z
UID:3030-1755198000-1755201600@www.nfnortheast.org
SUMMARY:NF Community Chat - August
DESCRIPTION:NF patients and their families/friends are invited to join us the evening of Thursday\, August 14th at 7pm for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-community-chat-august25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/06/August-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250817
DTEND;VALUE=DATE:20250818
DTSTAMP:20260404T041813
CREATED:20250321T191209Z
LAST-MODIFIED:20250819T143601Z
UID:2869-1755388800-1755475199@www.nfnortheast.org
SUMMARY:ASICS Falmouth Road Race 2025
DESCRIPTION:NF Northeast is so excited to again offer bibs for the ASICS Falmouth Road Race this year! The race will take place on Sunday\, August 17\, 2025. \nIn order to run with NF Northeast in the ASICS Falmouth Road Race there is a $1200 fundraising minimum. Bib numbers are limited\, so act fast to claim your spot for this iconic race! \nFor more information and to register to run for NF Northeast please visit the 2025 ASICS Falmouth Road Race registration site. For more information on the race\, visit: https://falmouthroadrace.com/ \n 
URL:https://www.nfnortheast.org/event/asics-falmouth-road-race-2025-2/
LOCATION:Woods Hole\, MA\, Woods Hole\, MA
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/WEB-Event-Page-Featured-Images.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250906T060000
DTEND;TZID=America/New_York:20250906T150000
DTSTAMP:20260404T041813
CREATED:20250213T184755Z
LAST-MODIFIED:20250909T144929Z
UID:2791-1757138400-1757170800@www.nfnortheast.org
SUMMARY:Coast to the Cure 2025
DESCRIPTION:Coast to the Cure is more than just a ride—it’s a movement of hope\, resilience\, and community. Now in its 14th year\, this annual cycling event empowers riders to pedal with purpose\, raising vital funds for patients and families affected by neurofibromatosis (NF) and its allied disorders. \nRegister for Coast to the Cure 2025 \nRegistration Fee – $50Fundraising Minimum – $350 \nRegistration fee includes rest stops with refreshments\, Coast to the Cure water bottle\, SAG wagon\, post-ride lunch by a local food truck\, and beer garden entrance (21+). \nThe ride starts and ends at Stage Fort Park in Gloucester\, MA and accommodates all cycling levels. Participants will have the option to choose from 24\, 40\, or 66 mile courses. Cycle along the rolling hills of Boston’s North Shore—see beautiful ocean views\, scenic horse and farm country\, state forests\, classic New England churches\, and picturesque coastal towns. \nRace Schedule:Registration – 6am66 Mile Ride start time – 7am40 Mile Ride start time – 8am24 Mile Ride start time – 9amFood Truck/Beer Garden – 11:30am to 3pm \nLunch tickets will be handed out upon arrival back at Stage Fort Park. Lunch tickets for friends and family who will be joining you are available for purchase on the Qgiv registration site ($25 per additional ticket). \nJoin us on this unforgettable journey to make a difference. With every pedal stroke\, you’re helping to bring hope\, resources\, and support to those living with NF—and moving us closer to a future where this genetic disorder is no longer a barrier to living life fully. \nFor more information contact Sara-Jane Griffin at sjgriffin@nfnortheast.org.\n  \nSpecial thanks to our Mission Sponsor: \n \nThank you to our Platinum Sponsor:
URL:https://www.nfnortheast.org/event/coast-to-the-cure-2025/
LOCATION:Stage Fort Park in Gloucester\, MA\, 24 Hough Ave\, Gloucester\, MA\, 01930\, United States
CATEGORIES:Community,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/02/Coast-Web-Graphic-2.png
ORGANIZER;CN="Sara-Jane Griffin":MAILTO:sjgriffin@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250914T090000
DTEND;TZID=America/New_York:20250914T120000
DTSTAMP:20260404T041813
CREATED:20250331T233107Z
LAST-MODIFIED:20250923T143408Z
UID:2910-1757840400-1757851200@www.nfnortheast.org
SUMMARY:Island Vines 10K & 5K
DESCRIPTION:Run the Island Vines 10K\, 5K & Kids Fun Run for NF Northeast! \nStart your race at Snow Farm Vineyard and take in the beautiful countryside of South Hero\, VT\, in the Island Vines 10K & 5K! Whether you’re running the 10K\, 5K\, or the half-mile Kids Fun Run\, you can make every step count by supporting NF Northeast. \nJoin Team NF Northeast to help raise awareness and funds for those affected by neurofibromatosis (NF)—all while enjoying a scenic and fun-filled race experience. \nReady to run for a cause? Sign up today and be part of something meaningful! \nFor more information\, contact Kim Trainor at ktrainor@nfnortheast.org
URL:https://www.nfnortheast.org/event/island-vines-10k-5k/
LOCATION:Snow Farm Vineyard\, 153 West Shore Rd\, South Hero\, Vermont
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-31-at-19-30-12-Island-Vines-5k-Running-Race-in-Vt-RunVermont.png
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250920T090000
DTEND;TZID=America/New_York:20250920T100000
DTSTAMP:20260404T041813
CREATED:20250903T032139Z
LAST-MODIFIED:20250923T143418Z
UID:3238-1758358800-1758362400@www.nfnortheast.org
SUMMARY:NF Community Chat - September
DESCRIPTION:NF patients and families are invited to join us at 9am on Saturday\, September 20th for a virtual NF coffee chat! These community-building chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-community-chat-sept25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/09/September-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250930T120000
DTEND;TZID=America/New_York:20250930T130000
DTSTAMP:20260404T041813
CREATED:20250806T154957Z
LAST-MODIFIED:20250924T203113Z
UID:3201-1759233600-1759237200@www.nfnortheast.org
SUMMARY:Tuesday Takeaways with Carey Pink: Music Therapy and Neurofibromatosis (NF)
DESCRIPTION:Tuesday Takeaways is our reoccurring lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor the first session of our Fall 2025 Tuesday Takeaways series\, please join us to learn more about the neurological and psycho-social benefits of music therapy for individuals living with NF. Carey Pink\, MT-BC\, NMT\, is a Board Certified Music Therapist who specializes in neurologic music therapy. She will share how music therapy can support emotional well-being\, cognitive function\, social connection\, and more! \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-with-carey-pink/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/08/September-2025-WEB-1.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251005T074500
DTEND;TZID=America/New_York:20251005T120000
DTSTAMP:20260404T041813
CREATED:20250616T194731Z
LAST-MODIFIED:20250924T203212Z
UID:3051-1759650300-1759665600@www.nfnortheast.org
SUMMARY:Maine Marathon\, Half Marathon\, and Relay
DESCRIPTION:Maine Marathon – Run for NF Northeast \nJoin Team NF Northeast at the Maine Marathon\, Half Marathon\, and Relay on October 5\, 2025\, in Portland\, ME! This scenic course along the Maine coast is perfect for runners of all levels. Fundraise for a cause and help support individuals and families affected by neurofibromatosis. \nLimited bibs available — contact ktrainor@nfnortheast.org for more information
URL:https://www.nfnortheast.org/event/maine-marathon/
LOCATION:Pedro Field\, 55 Baxter Boulevard\, Portland\, ME\, United States
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/webp:https://www.nfnortheast.org/wp-content/uploads/2025/06/MM2025-Logo-800.webp
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251016T183000
DTEND;TZID=America/New_York:20251016T200000
DTSTAMP:20260404T041813
CREATED:20250910T024013Z
LAST-MODIFIED:20250924T203221Z
UID:3277-1760639400-1760644800@www.nfnortheast.org
SUMMARY:Treatment Landscape in NF1-Plexiform Neurofibromas
DESCRIPTION:Treatment Landscape in NF1-Plexiform Neurofibromas: A Webinar for Patients and Caregivers of Individuals with NF1 \nJoin NF Northeast the evening of Thursday\, October 16th for a virtual educational event designed to inform individuals living with neurofibromatosis type 1 (NF1) related plexiform neurofibromas (PN)\, and their caregivers. This seminar will provide valuable resources for current clinical trials\, discuss navigating care and treatment options\, and share a powerful mother/ daughter perspective on living with NF1-PN. \nRegister Here \nFeatured Speakers: \n\nGurcharanjeet Kaur\, MD – Pediatric Neurologist/Neuro-oncologist\, Assistant Professor of Neurology and Pediatrics\, Director – NYP-Columbia NF Center\nVanessa Merker\, PhD – Assistant Professor of Neurology Massachusetts General Hospital/Harvard Medical School\nSamantha and Michelle P. – Sharing a powerful mother-daughter perspective\n\nThere will be a Q&A session where patients and caregivers will have the opportunity to ask questions. \nSponsored By:
URL:https://www.nfnortheast.org/event/treatment-landscape-in-nf1-plexiform-neurofibromas/
LOCATION:Zoom
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/09/WEB-1.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251021T190000
DTEND;TZID=America/New_York:20251021T200000
DTSTAMP:20260404T041813
CREATED:20250903T032410Z
LAST-MODIFIED:20250924T203224Z
UID:3241-1761073200-1761076800@www.nfnortheast.org
SUMMARY:NF Community Chat - October
DESCRIPTION:NF patients and their families/friends are invited to join us at 7pm the evening of Tuesday\, October 21st for a community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise. We hope you can join us at one or all of our upcoming virtual chats! \nRegister Here \n*After registering\, you will receive a confirmation email containing information about joining the meeting!
URL:https://www.nfnortheast.org/event/nf-community-chat-oct25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/09/October-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251025T090000
DTEND;TZID=America/New_York:20251025T140000
DTSTAMP:20260404T041813
CREATED:20250909T000405Z
LAST-MODIFIED:20251024T181454Z
UID:3245-1761382800-1761400800@www.nfnortheast.org
SUMMARY:NF Northeast Fall Hike for NF: Never Stop Climbing - Mount Agamenticus
DESCRIPTION:Unfortunately\, we’ll be canceling this Saturday’s Fall Hike for NF at Mount Agamenticus. \n\nThank you to everyone who showed interest and helped spread the word. \n\nWe’re already planning more community events and hope you’ll join us next time! 💙🌲
URL:https://www.nfnortheast.org/event/nf-northeast-fall-hike-mount-agamenticus/
LOCATION:Mount Agamenticus\, York\, Maine
CATEGORIES:Endurance Event
ATTACH;FMTTYPE=image/webp:https://www.nfnortheast.org/wp-content/uploads/2025/09/nfnortheast-fall-hike.webp
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251026T091500
DTEND;TZID=America/New_York:20251026T130000
DTSTAMP:20260404T041813
CREATED:20250331T233942Z
LAST-MODIFIED:20250924T203233Z
UID:2915-1761470100-1761483600@www.nfnortheast.org
SUMMARY:Newburyport Half Marathon\, Relay\, 5K
DESCRIPTION:Run the Newburyport Half Marathon\, Relay & 5K for NF Northeast! \nTake on the Newburyport Half Marathon\, Relay\, or 5K and make your miles matter! This scenic race through historic Newburyport\, MA\, offers a beautiful course and the chance to support NF Northeast. \nWhether you’re running solo in the Half Marathon or 5K\, or teaming up for the Relay\, you can help raise awareness and funds for those affected by neurofibromatosis (NF). \nReady to run for a cause? Join Team NF Northeast and be part of something bigger! \nFor more information\, contact Kim Trainor at ktrainor@nfnortheast.org
URL:https://www.nfnortheast.org/event/newburyport-half-marathon-relay-5k/
LOCATION:Cashman Park\, Sally Snyder Way\, Newburyport\, Massachusetts
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-31-at-19-37-56-Xfinity-Newburyport-Half-Marathon-Online-Registration.png
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
END:VCALENDAR