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X-WR-CALNAME:Neurofibromatosis Northeast
X-ORIGINAL-URL:https://www.nfnortheast.org
X-WR-CALDESC:Events for Neurofibromatosis Northeast
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260804T190000
DTEND;TZID=America/New_York:20260804T200000
DTSTAMP:20260709T144143Z
CREATED:20260529T152300Z
LAST-MODIFIED:20260709T144143Z
UID:4506-1785870000-1785873600@www.nfnortheast.org
SUMMARY:NF1 Community Education Series: Back to School
DESCRIPTION:NF Northeast invites you to join our Back to School program\, part of our NF1 Community Education Series sponsored by Alexion. \nLed by Alexion Patient Education Manager Mike Sager\, this free virtual session covers how to navigate the new school year for those affected by rare disease\, including how to collaborate with schools and avoid common\, frustrating obstacles. \nTuesday\, August 4th at 7:00 PM EST\nVirtual on Zoom \nRegister today using the link below or scan the QR code on the flyer.\nREGISTER HERE \nQuestions? Reach out to us anytime at nfnortheast.org. This program may be available in Spanish upon request.
URL:https://www.nfnortheast.org/event/nf1-community-education-series-back-to-school/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/06/Alexion_Back_to_School.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260810T183000
DTEND;TZID=America/New_York:20260810T203000
DTSTAMP:20260716T174635Z
CREATED:20260530T155250Z
LAST-MODIFIED:20260716T174635Z
UID:4536-1786386600-1786393800@www.nfnortheast.org
SUMMARY:Pain in Schwannomatosis (SWN) - A Holistic Approach to Pain Care
DESCRIPTION:Join us for a discussion with Dr. Rebecca Brown\, Director of the UAB NF Clinic\, and Dr. Brian Mayrsohn\, Founder of Maywell Pain Management. They’ll explore a holistic\, innovative approach to comprehensive pain management for individuals living with schwannomatosis (SWN). \nMonday\, August 10\, 2026 \n6:30 PM to 8:30 PM EST \nVirtual Event (Zoom) \nRegister Here
URL:https://www.nfnortheast.org/event/pain-in-schwannomatosis-swn-a-holistic-approach-to-pain-care/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/07/SWN-program-social-media-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260811T190000
DTEND;TZID=America/New_York:20260811T200000
DTSTAMP:20260721T145448Z
CREATED:20260513T154450Z
LAST-MODIFIED:20260721T145448Z
UID:4456-1786474800-1786478400@www.nfnortheast.org
SUMMARY:NF Coffee Chat - August
DESCRIPTION:NF patients and families are invited to join us at 7:00 PM on Tuesday\, August 11th\, for a virtual NF community chat! These community-building chats offer a great chance to connect with others affected by NF and engage in relaxed conversations about everyday concerns and questions. 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-august/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/05/August-2026.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260816
DTEND;VALUE=DATE:20260817
DTSTAMP:20260624T155910Z
CREATED:20260510T202006Z
LAST-MODIFIED:20260624T155910Z
UID:4376-1786838400-1786924799@www.nfnortheast.org
SUMMARY:ASICS Falmouth Road Race 2026
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 16\, 2026. \nIn order to run with NF Northeast in the ASICS Falmouth Road Race there is a $1500 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 2026 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-2026/
LOCATION:Woods Hole\, MA\, Woods Hole\, MA
CATEGORIES:Endurance Event,Fundraiser
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/04/ChatGPT-Image-May-15-2026-04_00_53-PM.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260910T180000
DTEND;TZID=America/New_York:20260910T190000
DTSTAMP:20260721T171644Z
CREATED:20260509T135128Z
LAST-MODIFIED:20260721T171644Z
UID:4557-1789063200-1789066800@www.nfnortheast.org
SUMMARY:The STARFISH Clinical Trial for pain relief in non-NF2 related Schwannomatosis
DESCRIPTION:Thursday\, September 106:00 PM ET \nJoin NF Northeast for an educational presentation on The STARFISH Clinical Trial for Pain Relief in Non-NF2 Related Schwannomatosis\, presented by Scott Plotkin\, MD\, and Vanessa Merker\, PhD. \nThis program will provide an overview of the STARFISH clinical trial\, including its goals and the latest information on research focused on pain relief for individuals with non-NF2 related schwannomatosis. \nMore information\, including registration details\, will be available soon. \nWe look forward to sharing additional updates in the coming weeks. Please check back for more information.
URL:https://www.nfnortheast.org/event/the-starfish-clinical-trial-for-pain-relief-in-non-nf2-related-schwannomatosis/
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/07/SWN-program-social-media-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260914T090000
DTEND;TZID=America/New_York:20260914T170000
DTSTAMP:20260624T160316Z
CREATED:20260508T152533Z
LAST-MODIFIED:20260624T160316Z
UID:4299-1789376400-1789405200@www.nfnortheast.org
SUMMARY:2026 Fall Golf Classic
DESCRIPTION:NF Northeast invites you to join us for our annual Fall Golf Classic on Monday\, September 14th at the Four Oaks Country Club in Dracut\, MA. Join us for a lovely day on the links! This relaxing day of golf includes a light breakfast\, cart/greens fees\, and an early dinner accompanied by awards\, raffles\, and a silent auction. \nRegistration \n\n\n\n\n$200 – Individual \n$800 – Foursome \nPlay will be in foursomes. Singles are welcome! Registration is on a first-come\, first-served basis. \n*Golf packages include cart\, greens fees\, continental breakfast\, and a buffet supper following golf. \nRegister for Fall Golf Classic \n\n  \nSponsorship Information \nPresenting Sponsor – $5\,000 \n\nCompany name as Presenting Sponsor on welcome sign displayed at event\nCompany’s collateral materials displayed*\nThree (3) tee box sponsorships\nAdmission for eight (8) golfers\nRecognition on website/marketing materials\nSpeaking opportunity during dinner program\n\n\nPlatinum Sponsor – $3\,000 \n\nCompany name as Platinum Sponsor on welcome sign displayed at event\nCompany’s collateral materials displayed*\nTwo (2) tee box sponsorships\nAdmission for four (4) golfers at tournament\nRecognition during dinner program\nCompany name on event signage\n\n\nGold Sponsor – $1\,500 \n\nCompany name as Gold Sponsor on welcome sign displayed at event\nCompany’s collateral materials displayed*\nTwo (2) tee box sponsorships\nRecognition during dinner program\nCompany name on event signage\n\n\nSilver Sponsor – $750 \n\nCompany name as Silver Sponsor on welcome sign displayed at event\nOne (1) tee box sponsorship\nRecognition during dinner program\nCompany name on event signage\n\n\nGolf Cart Sponsor – $500 \n\nCompany name & website on all golf carts\n\n\nTee Sponsor – $150 \n\nOne (1) tee box sponsorship\n\n*All collateral subject to approval by NF Northeast \n\nPlease contact Lauren Gilbert for more information on making an impact through event sponsorship.
URL:https://www.nfnortheast.org/event/2026-fall-golf-classic/
LOCATION:Four Oaks Country Club\, 1 Clubhouse Ln\, Dracut\, MA\, 01826\, United States
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/03/Greater-Boston-2.png
ORGANIZER;CN="Lauren Gilbert":MAILTO:lgilbert@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T060000
DTEND;TZID=America/New_York:20260919T150000
DTSTAMP:20260721T144701Z
CREATED:20260512T162249Z
LAST-MODIFIED:20260721T144701Z
UID:4193-1789797600-1789830000@www.nfnortheast.org
SUMMARY:Coast to the Cure 2026
DESCRIPTION:Coast to the Cure is more than just a ride—it’s a movement of hope\, resilience\, and community. Now in its 15th 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 2026 \nRegistration Fee – $50Fundraising Minimum – $350 \nRegistration fee includes rest stops with refreshments\, SAG wagon\, post-ride lunch by a local food truck\, beer garden entrance (21+)\, and an NF Northeast can koozie. \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 registration site. \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.
URL:https://www.nfnortheast.org/event/coast-to-the-cure-2026/
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/2026/02/Coast-Web-Graphic-2026.png
ORGANIZER;CN="Sara-Jane Griffin":MAILTO:sjgriffin@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260926T083000
DTEND;TZID=America/New_York:20260926T160000
DTSTAMP:20260708T181739Z
CREATED:20260502T184315Z
LAST-MODIFIED:20260708T181739Z
UID:4464-1790411400-1790438400@www.nfnortheast.org
SUMMARY:Beyond Sound 2026: A Day for NF2-SWN Patients & Care-Partners
DESCRIPTION:Mark your calendars! Beyond Sound 2026 is an empowering\, in-person NF2 workshop\, where you’ll learn about and experience communication strategies and resources for living with hearing loss. Join us to learn about updates in NF2 and to build connections in the NF2 community. \nREGISTER HERE 
URL:https://www.nfnortheast.org/event/beyond-sound-2026-a-day-for-nf2-swn-patients-care-partners/
CATEGORIES:Community,Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/05/BEYOND-SOUND-2026-SAVE-THE-DATE-1.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261014T190000
DTEND;TZID=America/New_York:20261014T200000
DTSTAMP:20260624T152241Z
CREATED:20260424T145822Z
LAST-MODIFIED:20260624T152241Z
UID:4501-1792004400-1792008000@www.nfnortheast.org
SUMMARY:NF1 Community Education Series: Career Readiness
DESCRIPTION:NF Northeast invites you to join our Career Readiness program\, part of our NF1 Community Education Series sponsored by Alexion. \nLed by Alexion Patient Education Manager Kristen Clark\, this free virtual session covers resume writing\, interview preparation\, and job search essentials\, including dos and don’ts and advice for navigating common interview questions. \nWednesday\, October 14th at 7:00 PM EST\nVirtual on Zoom \nRegister today using the link below or scan the QR code on the flyer.\nREGISTER HERE \nQuestions? Reach out to us anytime at nfnortheast.org. This program may be available in Spanish upon request.
URL:https://www.nfnortheast.org/event/nf1-community-education-series-career-readiness/
LOCATION:Zoom
CATEGORIES:Community
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2026/06/Alexion_Career_Readiness.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261215T080000
DTEND;TZID=America/New_York:20261215T170000
DTSTAMP:20250603T145918Z
CREATED:20241118T171858Z
LAST-MODIFIED:20250603T145918Z
UID:1631-1797321600-1797354000@www.nfnortheast.org
SUMMARY:Previous Events
DESCRIPTION:Click Here to View Previous Events
URL:https://www.nfnortheast.org/event/previous-events/
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2023/11/White-Background.png
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