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X-WR-CALDESC:Events for Neurofibromatosis Northeast
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250914T090000
DTEND;TZID=America/New_York:20250914T120000
DTSTAMP:20260404T041755
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:20260404T041755
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:20260404T041755
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:20260404T041755
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:20260404T041755
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:20260404T041755
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:20260404T041755
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:20260404T041755
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251102T070000
DTEND;TZID=America/New_York:20251102T120000
DTSTAMP:20260404T041755
CREATED:20250331T234554Z
LAST-MODIFIED:20250924T203242Z
UID:2920-1762066800-1762084800@www.nfnortheast.org
SUMMARY:Cambridge Half Marathon
DESCRIPTION:Run the Cambridge Half Marathon & Support NF Northeast! \nTake on the Cambridge Half Marathon and turn your run into something more! This scenic race through historic Cambridge\, MA\, offers a fast\, exciting course—and a chance to make a real impact. \nBy joining Team NF Northeast\, you’re not just running; you’re helping to raise critical funds and awareness for those affected by neurofibromatosis (NF). Every mile brings us closer to a cure! \nBe part of something bigger. Sign up today and run for a cause! \nFor more information\, contact Kim Trainor at ktrainor@nfnortheast.org
URL:https://www.nfnortheast.org/event/cambridge-half-marathon/
LOCATION:CambridgeSide Galleria\, 100 Cambridgeside Pl\, Cambridge\, Massachusetts
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-31-at-19-44-09-Cambridge-Half-Marathon.png
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251104T120000
DTEND;TZID=America/New_York:20251104T130000
DTSTAMP:20260404T041755
CREATED:20250923T205359Z
LAST-MODIFIED:20250924T203247Z
UID:3284-1762257600-1762261200@www.nfnortheast.org
SUMMARY:Tuesday Takeaways with Devorah Segal: Updates and Care Management – NF1 Plexiform Neurofibromas (NF1-PN)
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 curious about current therapies and management for NF1-related plexiform neurofibromas (NF1-PNs)? Devorah Segal\, MD\, PhD\, is an expert in NF care and the Associate Director of the Comprehensive Neurofibromatosis Center at NYU Langone Health. Dr. Segal will discuss the latest guidelines and therapies for plexiform neurofibromas. \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-devorah-segal/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/09/November-2025-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251107T180000
DTEND;TZID=America/New_York:20251107T210000
DTSTAMP:20260404T041755
CREATED:20250910T020513Z
LAST-MODIFIED:20251107T201624Z
UID:3265-1762538400-1762549200@www.nfnortheast.org
SUMMARY:Committed to Curing NF 2025
DESCRIPTION:Join us as we celebrate Committed to Curing NF’s 16th year being committed to finding a CURE for NF! New venue\, SMALLER SCALE\, but always the same goal…CURE NF! \nThe Malerba Family joyfully invites you to be a part of their mission to Cure NF on Friday\, November 7th at The Great American Beer Hall in Medford. It will be a cocktail party featuring light appetizers\, great company\, and chances to win some exciting raffles. \nAll raffles will be available ONLINE starting now until November 6th at 6:00pm\, as well as IN PERSON at the event. Buy your raffles now or wait for the big night! For those of you who are unable to join on this special night\, try your luck in one of the drawings and/or make a tax-deductible donation to NF Northeast. \nEvent Tickets: \nFree to Attend! \nPurchase Tickets \nRaffle Options: \n(Available for purchase ONLINE or AT the event) \n\n50/50 Drawing – The more tickets sold\, the more money you can win! The winner of the 50/50 drawing will split the final pot with NF Northeast. $25 per chance\nScratch Ticket Tree Drawing – Enter to win $300 worth of scratch tickets. $25 per chance\n\nVIP EXPERIENCE DRAWING – $35 per chance \nTake a chance to watch the Boston Bruins vs New York Rangers (01/10/26) OR the Boston Celtics vs. Milwaukee Bucks (02/01/26) from a private luxury suite for 21 people on Level 6 of TD Garden. This VIP suite offers your group a private\, comfortable atmosphere with fantastic views of the on-court action. The included 1K in-suite catering makes this a day to remember!! \nWinning Package Includes: \n\n\n\n21 suite tickets to a private luxury suite near center ice on Level 6\n2 VIP parking passes on Level 1 of the TD Garden Garage\nFood & Beverage package included worth $1K\nAccess to private BGS entrances with dedicated elevators that bring you straight from the parking garage or street level to your suite level\nEarly access to the arena\, starting 2 hours prior to the game\nA private common area for mingling plus a private restroom\nA dedicated suite attendant for your food & beverage needs. Various options for food and beverage add-ons are available for purchase.\nAccess to Society Provisions and Society Harborview Lounge\n\n\n\n  \nTax-Deductible Donation Options: \nLooking to make a donation? Choose one of our tax-deductible donor options and be featured in our event program. \nFriends of Jonathan – $100 Donation \nSpecial Friends of Jonathan – $250 Donation \nSilver Donor – $300 Donation \nGold Donor – $500 Donation \nPlatinum Donor – $1\,000 Donation \nNF Champion Donor – $1\,500 Donation \n  \nIf you would like to make a financial gift or donate raffle items for this special night\, contact Melissa Malerba at melissamalerba2028@gmail.com or 781-883-0921. \n \nThis event is coordinated by Melissa and Michael Malerba\, and it is held in honor of their eighteen-year-old son Jonathan who was diagnosed with neurofibromatosis type 1 in 2009. Through the generous support of previous donors\, Committed to Curing NF has successfully raised over $1 million for Neurofibromatosis Northeast! While the Malerbas are overjoyed with the tremendous outpouring of support\, they are not going to rest until they reach their ultimate goal… the cure for NF. 
URL:https://www.nfnortheast.org/event/committed-to-curing-nf-2025/
LOCATION:The Great American Beer Hall\, 142 Mystic Avenue\, Medford\, 02155\, United States
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/09/Committed-to-Curing-2025-WEB.png
ORGANIZER;CN="Melissa Malerba":MAILTO:melissamalerba2028@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251108T103000
DTEND;TZID=America/New_York:20251108T153000
DTSTAMP:20260404T041755
CREATED:20250902T232008Z
LAST-MODIFIED:20250924T203255Z
UID:3211-1762597800-1762615800@www.nfnortheast.org
SUMMARY:Beyond Sound: Communication Strategies for the Deaf and Hard-of-Hearing NF2-SWN Community
DESCRIPTION:NF Northeast invites you and a guest to an immersive\, in-person workshop where you’ll learn about (and experience) various communication strategies & resources to use while living with hearing loss. Whether you’re navigating NF2-SWN associated hearing loss or supporting someone who is\, this program will offer valuable insights into accessible communication methods and empowering resources. \nRegister Here \nThis interactive program blends expert insight with hands-on exploration. Highlights include: \n\n\n\nDiscussion of latest NF2-SWN therapies by Dr. Brad Welling (Massachusetts Eye and Ear) and Dr. Lauren Weintraub (Albany Medical Center)\nPatient panel sharing personal experiences with assistive communication tools including lip reading\, smart glasses\, mobile apps\, service animals\, and more\nAn “Experience Lab” for trialing or exploring cutting-edge communication technologies and resources\nBreakout sessions for patients and caregivers\n\n\n\nLunch will be provided during this event. A limited number of stipends are available to offset the cost of travel and lodging. Please email Anne Patterson at apatterson@nfnortheast.org to request a stipend. Questions? Call 781-272-9936 \nThank you to our sponsors: \n \n \nThe Shaw Family NF2-SWN Fund
URL:https://www.nfnortheast.org/event/beyond-sound-communication-strategies/
LOCATION:Saratoga Senior Center\, 290 West Avenue Suite 1\, Saratoga Springs\, NY\, 12866\, United States
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/08/Beyond-Sound-WEB-graphic.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251109T085000
DTEND;TZID=America/New_York:20251109T160000
DTSTAMP:20260404T041755
CREATED:20250331T235245Z
LAST-MODIFIED:20250924T203259Z
UID:2925-1762678200-1762704000@www.nfnortheast.org
SUMMARY:Manchester City Marathon\, Half Marathon\, Relay and 5K
DESCRIPTION:Run the Manchester City Marathon\, Half Marathon\, Relay & 5K for NF Northeast! \nJoin us for the Manchester City Marathon\, Half Marathon\, Relay\, or 5K\, and turn your race into a powerful way to support those affected by neurofibromatosis (NF). \nWhether you’re going the full 26.2 miles\, running a Half Marathon\, teaming up for the Relay\, or challenging yourself in the 5K\, you’ll be making every mile count by raising awareness and funds for NF Northeast. \nBe part of Team NF Northeast\, push yourself to new limits\, and help us make a difference in the fight against NF! \nReady to run for a cause? Sign up today and help us take steps toward a brighter future for those with NF! \nFor more information\, contact Kim Trainor at ktrainor@nfnortheast.org
URL:https://www.nfnortheast.org/event/manchester-city-marathon-half-marathon-relay-and-5k/
LOCATION:Veterans Park\, 799 Elm St\, Manchester\, New Hampshire
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/03/Screenshot-2025-03-31-at-19-51-53-CMC-Manchester-City-Marathon-Half-Marathon-5k-Online-Registration.png
ORGANIZER;CN="Kim Trainor":MAILTO:ktrainor@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251115T090000
DTEND;TZID=America/New_York:20251115T100000
DTSTAMP:20260404T041755
CREATED:20250924T202718Z
LAST-MODIFIED:20250924T203303Z
UID:3290-1763197200-1763200800@www.nfnortheast.org
SUMMARY:NF Community Chat - November
DESCRIPTION:NF patients and families are invited to join us at 9am on Saturday\, November 15th 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-november25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/09/November-25.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251118T120000
DTEND;TZID=America/New_York:20251118T130000
DTSTAMP:20260404T041755
CREATED:20251001T200102Z
LAST-MODIFIED:20251001T201700Z
UID:3421-1763467200-1763470800@www.nfnortheast.org
SUMMARY:Tuesday Takeaways with Dr. Michele Distefano\, AUD\, CCC/A: Hearing Loss 101 and Coping Strategies
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. \nHearing Loss 101 and Coping Strategies: Are you or a loved one experiencing hearing loss? Hearing health is incredibly important and can affect people living with neurofibromatosis\, schwannomatosis\, and the general population in different ways. Dr. Michele DiStefano\, an expert in audiology from the Center for Hearing and Communication\, will be talking about the signs and symptoms of hearing loss and effective coping strategies. \nRegister Here  \n\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-dr-michele-distefano-aud-ccc-a-hearing-loss-101-and-coping-strategies/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/jpeg:https://www.nfnortheast.org/wp-content/uploads/2025/10/November-2025-WEB1-1-1-e1759347819475.jpg
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251209T120000
DTEND;TZID=America/New_York:20251209T130000
DTSTAMP:20260404T041755
CREATED:20251001T201256Z
LAST-MODIFIED:20251001T201954Z
UID:3429-1765281600-1765285200@www.nfnortheast.org
SUMMARY:Tuesday Takeaways with Dr. Karin Walsh: Developmental\, Cognitive\, and Social-Emotional Challenges in NF1
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 a parent or caregiver of a child living with NF? Please join us for an engaging discussion with Dr. Karin Walsh\, who will discuss developmental\, cognitive\, and social-emotional challenges in NF1\, from childhood to young adulthood. She will share resources for families to seek professional guidance in navigating these challenges. \nRegister Here \nPlease join us for any or all of these sessions taking place each month at 12 pm via Zoom on Tuesdays. Find other sessions on our event calendar: www.nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-with-dr-karin-walsh-developmental-cognitive-and-social-emotional-challenges-in-nf1/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/webp:https://www.nfnortheast.org/wp-content/uploads/2025/10/December-2025-WEB1.webp
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251218T190000
DTEND;TZID=America/New_York:20251218T200000
DTSTAMP:20260404T041755
CREATED:20251201T213053Z
LAST-MODIFIED:20251222T195942Z
UID:3293-1766084400-1766088000@www.nfnortheast.org
SUMMARY:NF Holiday Community Chat - December
DESCRIPTION:NF patients and their families/friends are invited to join us at 7pm the evening of Thursday\, December 18th for a virtual\, holiday community 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-december25/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/jpeg:https://www.nfnortheast.org/wp-content/uploads/2025/09/December-25-holiday2-1.jpg
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260120T120000
DTEND;TZID=America/New_York:20260120T130000
DTSTAMP:20260404T041755
CREATED:20250422T190007Z
LAST-MODIFIED:20260128T172022Z
UID:3759-1768910400-1768914000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways: NF Collective Highlights
DESCRIPTION:Join us for our Tuesday Takeaways\, a one-hour educational lunchtime session\, geared towards sharing relevant updates and educational materials with our NF community. These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \n\nAre you familiar with the NF Collective? Join us to learn more about this collaborative network of neurofibromatosis (NF) organizations. The NF Collective is committed to enhancing the quality of life for individuals affected by NF and their families by providing resources\, support services\, and information about qualified NF healthcare providers. \nREGISTER HERE  \n\n 
URL:https://www.nfnortheast.org/event/tuesday-takeaways-nf-collective-highlights/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/jpeg:https://www.nfnortheast.org/wp-content/uploads/2025/12/January-2026-WEB3.jpg
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260122T190000
DTEND;TZID=America/New_York:20260122T200000
DTSTAMP:20260404T041755
CREATED:20231222T195936Z
LAST-MODIFIED:20260204T143346Z
UID:3820-1769108400-1769112000@www.nfnortheast.org
SUMMARY:NF Community Chat - January
DESCRIPTION:NF patients and their families/friends are invited to join us at 7pm EST the evening of Thursday\, January 22nd for a virtual community 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-january/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/12/November-22.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260214T090000
DTEND;TZID=America/New_York:20260214T100000
DTSTAMP:20260404T041755
CREATED:20260106T232134Z
LAST-MODIFIED:20260128T172623Z
UID:3825-1771059600-1771063200@www.nfnortheast.org
SUMMARY:NF Coffee Chat - February
DESCRIPTION:NF patients and their families/friends are invited to join us the morning of Saturday\, February 14th at 9am EST 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-coffee-chat-february/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/12/October-22.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260214T100000
DTEND;TZID=America/New_York:20260214T120000
DTSTAMP:20260404T041755
CREATED:20260107T232211Z
LAST-MODIFIED:20260128T172503Z
UID:3696-1771063200-1771070400@www.nfnortheast.org
SUMMARY:13th Annual Cupid's Chase 5K
DESCRIPTION:Join us for the 13th annual Cupid’s Chase 5K on Saturday\, February 8th! Flat\, fast 5k run/walk around Lake Quannapowitt in Wakefield\, MA. 100% of proceeds from the race are donated to Neurofibromatosis Northeast. Stay afterwards for a post-race celebration including awards and a beer from Samuel Adams (beer is included with registration for all participants and volunteers over 21)! \nRegister Here \nEvent Distance: 5K  (3.1 Miles) \nStart Time: 10:00am \nRegistration: 8am – 9:45am \nStart Location: Quannapowitt Parkway\, Wakefield MA \nFinish Location: Lakeside Inn parking lot\, Wakefield MA \n*Race shirt guaranteed if registered by 1/20/2026 \nOnline registration ends on Thursday\, February 12th at noon. Runners/walkers can register at packet pick-up Friday night at Marathon Sports in Melrose from  4pm-7pm and at Lakeside Inn Saturday morning from 8am-9:45 am. \nRegistration Fees \n\nEarly Bird (through 12/31) – $30\nStandard (1/1-2/7) – $35\nLate (2/8-2/12) – $40\nRace Day – $45\n\nNo Shirt Option:  Save $5 \nCourse Map
URL:https://www.nfnortheast.org/event/13th-annual-cupids-chase-5k/
LOCATION:Lakeside Inn – Lake Quannapowitt\, 599 North Ave\, Wakefield\, MA\, 01880\, United States
CATEGORIES:Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/12/WEB-Event-Page-Featured-Images.png
ORGANIZER;CN="Beth Hanlon":MAILTO:cupidschasema@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260222T140000
DTEND;TZID=America/New_York:20260222T160000
DTSTAMP:20260404T041755
CREATED:20260205T183628Z
LAST-MODIFIED:20260205T183628Z
UID:4170-1771768800-1771776000@www.nfnortheast.org
SUMMARY:Family Bowling Event - Connecticut
DESCRIPTION:We’re thrilled to bring the Hartford area NF Northeast community together for an afternoon of strikes\, spares\, and connection! Meet other families\, share experiences\, and enjoy some fun in a relaxed\, welcoming environment. All are welcome! \n$13 per bowler (includes shoes) – pay at the door. Food and drink will be available for purchase.  RSVP encouraged. \nRSVP HERE.
URL:https://www.nfnortheast.org/event/family-bowling-connecticut/
LOCATION:Spare Time\, 177 Farmington Ave\, Bristol\, CT\, 06010\, United States
CATEGORIES:Community
ATTACH;FMTTYPE=image/jpeg:https://www.nfnortheast.org/wp-content/uploads/2026/02/HartfordBowlingbanner.jpg
ORGANIZER;CN="Sara-Jane Griffin":MAILTO:sjgriffin@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260303T190000
DTEND;TZID=America/New_York:20260303T200000
DTSTAMP:20260404T041755
CREATED:20251122T161744Z
LAST-MODIFIED:20251226T165900Z
UID:3829-1772564400-1772568000@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 3rd at 7pm EST 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-march/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/11/December-22-1.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260305T120000
DTEND;TZID=America/New_York:20260305T130000
DTSTAMP:20260404T041755
CREATED:20260210T184217Z
LAST-MODIFIED:20260210T184217Z
UID:4199-1772712000-1772715600@www.nfnortheast.org
SUMMARY:NF Summer Camps Information Session
DESCRIPTION:It’s time to start planning camps and activities for this summer! Join us for an information session that will highlight Double H Ranch in the Adirondack Region of NY\, The Woodlands Camp in PA\, and more! Representatives from each location will be sharing details about the unique programs that will be offered this summer! \nRegister Here
URL:https://www.nfnortheast.org/event/nf-summer-camps-information-session26/
LOCATION:Zoom
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/02/Summer-Camp-Info-Session-WEB.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260305T183000
DTEND;TZID=America/New_York:20260305T200000
DTSTAMP:20260404T041755
CREATED:20251122T155804Z
LAST-MODIFIED:20260306T185023Z
UID:3783-1772735400-1772740800@www.nfnortheast.org
SUMMARY:Stronger Together in Schwannomatosis
DESCRIPTION:NF Northeast is hosting a three-part miniseries that delves into topics related to our schwannomatosis (SWN) community. SWN experts will shed light on the importance of well-being\, pain management\, and understanding in-depth genetics for individuals living with schwannomatosis. Join us for one or all of these engaging discussions. \n\n\nSession 1: Tuesday\, January 27th\, 6:30-8:00 pm EST\n Living Well with Schwannomatosis\, Amanda Bergner\, MS\, LCGC\nAmanda will discuss the importance of well-being and mental/emotional health when living with a rare genetic condition such as SWN. The focus will be on coping with the diagnostic odyssey that often occurs with SWN. Discussions will focus on monitoring well-being\, relationships\, and quality of life.\n\n\nPAST EVENT \n\n\nSession 2: Tuesday\, February 3rd\, 6:30-8:00 pm EST\n Understanding Pain and Coping Strategies in SWN\, Frank Buono\, PhD\n               Dr. Buono’s session will be geared towards pain management in schwannomatosis. One of the top concerns of most individuals living with SWN is their pain. Join us for this interactive session with an expert and your peers to learn more about pain management guidelines and strategies.\n\nPAST EVENT \n\n\n\nSession 3: Thursday\, March 5th\, 6:30-8:00 pm EST\n In-depth Schwannomatosis Genetics\, Alicia Gomes\, MS\, CGS\n          Alicia will discuss the basics of genetics in schwannomatosis\, inheritance\, and the different variants. Receiving a diagnosis of schwannomatosis (SWN) and/or managing a complication from SWN can result in a range of emotions and medical interventions. Tune in to learn more about the genetics involved.\n\nPAST EVENT
URL:https://www.nfnortheast.org/event/stronger-together-in-schwannomatosis/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/12/thumbnail_SWN-SOCIAL-MEDIA-IDEAS3.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260315T173000
DTEND;TZID=America/New_York:20260315T193000
DTSTAMP:20260404T041755
CREATED:20260215T230542Z
LAST-MODIFIED:20260306T185432Z
UID:2731-1773595800-1773603000@www.nfnortheast.org
SUMMARY:Community Bowling Night - Boston
DESCRIPTION:We’re thrilled to bring the Rhode Island and Boston area NF Northeast community together for a night of strikes\, spares\, and connection! Meet other families\, share experiences\, and enjoy some fun in a relaxed\, welcoming environment. All are welcome! \nThis event is free to attend – RSVP encouraged.  Bowling and shoes are complimentary\, thanks to the generosity of Kings Bowling. Food and drink will be available for purchase.\n\nRSVP Here
URL:https://www.nfnortheast.org/event/family-bowling-night-boston/
LOCATION:Kings Dedham – Legacy Place\, 600 Legacy Place\, Dedham\, MA\, 02026
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/02/Greater-Boston-7.png
ORGANIZER;CN="Lauren Gilbert":MAILTO:lgilbert@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260328T080000
DTEND;TZID=America/New_York:20260328T160000
DTSTAMP:20260404T041755
CREATED:20260218T000530Z
LAST-MODIFIED:20260218T222343Z
UID:4106-1774684800-1774713600@www.nfnortheast.org
SUMMARY:Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area
DESCRIPTION:Journey in Focus: A Retreat for Patients with NF1 in the Greater Philadelphia area \nHosted by NF Northeast \nSaturday\, March 28\, 2026\n8:00 AM – 4:00 PM \nThe Desmond Hotel Malvern\n1 Liberty Blvd\, Malvern\, PA \n(please note: Malvern\, PA is located approximately 25 miles NW of Philadelphia) \n What Is Journey in Focus? \nA one-day retreat designed to support individuals and families affected by Neurofibromatosis Type 1 (NF1) through education\, connection\, and shared experience. The program centers patient and care-partner voices and provides practical tools\, meaningful dialogue\, and opportunities to build community. \n Program Highlights \n\nUpdates in NF1 Care Management\nLearn about current care strategies\, emerging research\, and ongoing and upcoming clinical trials.\nPatient Learning Lab\nAn interactive space to gain practical tools and discuss real-life challenges of living with NF1.\nForums for Every Journey\nDedicated discussion groups for adults with NF1\, teens and young adults\, and care-partners.\nTopics That Matter\nSessions on developmental and social/emotional challenges\, mental health and wellness\, family planning\, and navigating school\, work\, and relationships.\n\n Connect\, Learn\, You’re Not Alone! \nREGISTER HERE or click on this link http://weblink.donorperfect.com/JourneyinFocusforNF1 \nFree to Attend\, Must Register  \nSpace is Limited! \nYou may also scan this QR code  \nA limited number of stipends are available for patients living in the Northeast region to offset the cost of travel and lodging. If you do not live in the Northeast\, you may join a waitlist\, and should stipends become available\, we will notify you. Please email Anne Patterson at apatterson@nfnortheast.org to request a stipend. Questions? Call 781-272-9936. *This retreat is for ages 14 years and up \nGenerously Sponsored by: Alexion Pharmaceuticals and SpringWorks Therapeutics
URL:https://www.nfnortheast.org/event/journey-in-focus-a-retreat-for-patients-with-nf1/
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/01/Untitled-design-3.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260418T090000
DTEND;TZID=America/New_York:20260418T100000
DTSTAMP:20260404T041755
CREATED:20251121T162713Z
LAST-MODIFIED:20251226T165130Z
UID:3834-1776502800-1776506400@www.nfnortheast.org
SUMMARY:NF Coffee Chat - April
DESCRIPTION:NF patients and their families/friends are invited to join us the morning of Saturday\, April 18th at 9am EST 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-coffee-chat-april/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/12/May-22.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260502T090000
DTEND;TZID=America/New_York:20260502T120000
DTSTAMP:20260404T041755
CREATED:20251001T170908Z
LAST-MODIFIED:20251124T150934Z
UID:3394-1777712400-1777723200@www.nfnortheast.org
SUMMARY:Steps2Cure NF - Westchester County\, NY
DESCRIPTION:Steps2Cure NF is more than a walk—it’s a powerful movement of hope and support for those affected by neurofibromatosis (NF). By joining us\, you’ll help fund NF Northeast’s essential programs that provide patient support\, advocate for better treatments\, and drive research\, making a real difference in the lives of individuals and families facing this challenging disorder. \nRegister or donate today and help illuminate the path to a brighter tomorrow for those living with NF. \nREGISTRATION WEBSITE AND EVENT DETAILS
URL:https://www.nfnortheast.org/event/steps2cure-nf-westchester-county-ny-2026/
LOCATION:FDR State Park\, 2957 Crompond Rd\, Yorktown Heights\, NY\, 10598
CATEGORIES:Community,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/10/Westchester-NY.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260502T090000
DTEND;TZID=America/New_York:20260502T120000
DTSTAMP:20260404T041755
CREATED:20251006T125608Z
LAST-MODIFIED:20260220T123642Z
UID:3439-1777712400-1777723200@www.nfnortheast.org
SUMMARY:Steps2Cure NF - Hartford\, CT
DESCRIPTION:Steps2Cure NF is more than a walk—it’s a powerful movement of hope and support for those affected by neurofibromatosis (NF). By joining us\, you’ll help fund NF Northeast’s essential programs that provide patient support\, advocate for better treatments\, and drive research\, making a real difference in the lives of individuals and families facing this challenging disorder. \nRegister or donate today and help illuminate the path to a brighter tomorrow for those living with NF. \nREGISTRATION WEBSITE AND EVENT DETAILS
URL:https://www.nfnortheast.org/event/steps2cure-nf-hartford-ct-2026/
LOCATION:Dunkin’ Park\, 1214 Main Street\, Hartford\, CT\, 06103\, United States
CATEGORIES:Community,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2025/10/Hartford-2.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
END:VCALENDAR