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X-WR-CALDESC:Events for Neurofibromatosis Northeast
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260328T080000
DTEND;TZID=America/New_York:20260328T160000
DTSTAMP:20260416T070408
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:20260305T183000
DTEND;TZID=America/New_York:20260305T200000
DTSTAMP:20260416T070408
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:20260120T120000
DTEND;TZID=America/New_York:20260120T130000
DTSTAMP:20260416T070408
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:20251209T120000
DTEND;TZID=America/New_York:20251209T130000
DTSTAMP:20260416T070408
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:20251118T120000
DTEND;TZID=America/New_York:20251118T130000
DTSTAMP:20260416T070408
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:20251104T120000
DTEND;TZID=America/New_York:20251104T130000
DTSTAMP:20260416T070408
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:20250930T120000
DTEND;TZID=America/New_York:20250930T130000
DTSTAMP:20260416T070408
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:20250812T120000
DTEND;TZID=America/New_York:20250812T130000
DTSTAMP:20260416T070408
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:20250624T120000
DTEND;TZID=America/New_York:20250624T130000
DTSTAMP:20260416T070408
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:20250520T120000
DTEND;TZID=America/New_York:20250520T130000
DTSTAMP:20260416T070408
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:20250422T120000
DTEND;TZID=America/New_York:20250422T130000
DTSTAMP:20260416T070408
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:20250405T100000
DTEND;TZID=America/New_York:20250405T140000
DTSTAMP:20260416T070408
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:20250329T103000
DTEND;TZID=America/New_York:20250329T123000
DTSTAMP:20260416T070408
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:20241210T120000
DTEND;TZID=America/New_York:20241210T130000
DTSTAMP:20260416T070408
CREATED:20241030T003359Z
LAST-MODIFIED:20241210T185440Z
UID:2408-1733832000-1733835600@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #6 with Mike Sager
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 for our final session of 2024 to learn useful tips for having better conversations with your healthcare providers and care team. Mike Sager\, Patient Education Manager at Alexion Pharmaceuticals\, will show you how to use a Conversation Planning Worksheet to prepare for these discussions. You’ll leave knowing how to set goals for your interactions and how to make each conversation more effective! \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: nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-6-mike-sager/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/10/December-WEB-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241105T120000
DTEND;TZID=America/New_York:20241105T130000
DTSTAMP:20260416T070408
CREATED:20241016T184432Z
LAST-MODIFIED:20241105T202511Z
UID:2392-1730808000-1730811600@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #5 with Mike Sager
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 our fifth session of our Fall 2024 series\, we welcome Mike Sager\, Patient Education Manager with Alexion Pharmaceuticals! Are you interested in learning helpful techniques that will improve how you advocate for yourself? Join us for an information session where Mike will share tips and strategies on how to advocate for yourself at home\, work\, medical appointments and more. \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on Tuesdays\, August through December. Find our other sessions on our event calendar: nfnortheast.org/events
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-5-with-mike-sager/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/10/November-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241015T121500
DTEND;TZID=America/New_York:20241015T131500
DTSTAMP:20260416T070408
CREATED:20240724T140258Z
LAST-MODIFIED:20241022T150505Z
UID:2272-1728994500-1728998100@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #4 with Amanda Bergner
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 fourth session of our Fall 2024 Tuesday Takeaways series\, we welcome NF/SWN expert and genetic counselor\, Amanda Bergner\, to talk about various aspects of family planning across the lifespan for people with NF or schwannomatosis and their loved ones. Amanda will provide an overview of recent literature on topics such as birth control\, dating and disclosure to others\, considerations in pregnancy\, and options for genetic testing including preimplantation genetic testing (PGT). Bring your questions\, we’ll have time for discussion afterwards! \nRegister Here \n*Please note this Tuesday Takeaways session begins at 12:15PM\, 15 minutes later than usual \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on Tuesdays\, August through December.
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-3/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/07/October-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241008T120000
DTEND;TZID=America/New_York:20241008T130000
DTSTAMP:20260416T070408
CREATED:20240821T151119Z
LAST-MODIFIED:20241009T151344Z
UID:2313-1728388800-1728392400@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #3 with Mike Sager
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 Fall 2024 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 use when advocating 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 at 12pm via Zoom on Tuesdays\, August through December.
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-3-with-mike-sager/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/08/October-1-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240917T120000
DTEND;TZID=America/New_York:20240917T130000
DTSTAMP:20260416T070408
CREATED:20240821T152012Z
LAST-MODIFIED:20240917T175518Z
UID:2318-1726574400-1726578000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #2 with Dr. Rukin Gold and Dr. SantaCruz
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 our second session to meet Dr. Rukin Gold\, NF Specialist and Child Neurologist\, and Dr. SantaCruz\, Pediatric Hematologist and Oncologist\, from Dartmouth Hitchcock Medical Center’s NF Clinic. They will be speaking about NF and discussing new resources and opportunities for patients living in the New England/New Hampshire area. \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on Tuesdays\, August through December.
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-2-with-dartmouth-hitchcock/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/08/September-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240806T120000
DTEND;TZID=America/New_York:20240806T130000
DTSTAMP:20260416T070408
CREATED:20240704T013022Z
LAST-MODIFIED:20240821T140515Z
UID:2249-1722945600-1722949200@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #1 with Mike Sager
DESCRIPTION:Tuesday Takeaways is our reoccurring multi-part 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 2024 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 be sharing helpful resources and strategies on how to support those we care for and discussing the importance of personal self-care along the way. \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (August through December)
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-1-with-mike-sager/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/07/August-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240528T120000
DTEND;TZID=America/New_York:20240528T130000
DTSTAMP:20260416T070408
CREATED:20240131T201612Z
LAST-MODIFIED:20240528T192405Z
UID:1763-1716897600-1716901200@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #4 with Anne Patterson & Sharon Klein
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor our fourth and final session of the Spring 2024 series\, two NF Northeast professionals—Anne Patterson\, Director of Patient and Clinic Outreach\, and Sharon Klein\, Executive Director—will host an information session on trusted NF clinics located in the northeast! We’re fortunate that here in the northeast there are many NF providers offering world class expert care to NF patients and their families. With May being NF Awareness Month\, we would like to take a moment to highlight the NF clinics in our northeast region and will welcome some special guest speakers to highlight their clinic/team. Join us for this informative session that will shed light on where to find compassionate and expert care for you or your loved one with neurofibromatosis. \nRegister Here \nThank you to all who have tuned in for our Tuesday Takeaway series this spring—keep an eye out for another series in the fall! \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-4-with-patterson-klein/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/01/May-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240430T120000
DTEND;TZID=America/New_York:20240430T130000
DTSTAMP:20260416T070408
CREATED:20240131T195228Z
LAST-MODIFIED:20240430T161646Z
UID:1760-1714478400-1714482000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #3 with Robyn Fatseas
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor our third session\, we’re excited to welcome Robyn Fatseas\, M.A. and Complex Child Development Specialist\, to discuss creative solutions for initiating behavior change in your child. Behavior is a form of communication\, so how do caregivers effectively attend to their child and achieve desirable results for everyone? Robyn will be sharing her insight on approaching different scenarios with thoughtfulness and intentionality when behavior change is desired. Join us for this informative and interactive session! \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (February through May). \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-3-with-robyn-fatseas/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/01/April-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240326T120000
DTEND;TZID=America/New_York:20240326T130000
DTSTAMP:20260416T070408
CREATED:20240131T193936Z
LAST-MODIFIED:20240328T180533Z
UID:1757-1711454400-1711458000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #2 with Dr. Gary Brenner
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing relevant updates and educational materials with our NF community. \nFor our second session\, we’re welcoming Dr. Gary Brenner\, Director of the Pain Medicine Fellowship at Massachusetts General Hospital. Dr. Brenner runs an NIH-funded lab focused on developing gene therapy for the often painful peripheral nervous system tumors associated with neurofibromatosis/schwannomatosis. A significant portion of his research is dedicated to developing novel therapies for the treatment of schwannomas. Please join us to learn about the use of genetically modified Salmonella strains for treating schwannoma. \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (February through May). \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-2-with-gary-brenner/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/01/March-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240227T120000
DTEND;TZID=America/New_York:20240227T130000
DTSTAMP:20260416T070408
CREATED:20240131T193110Z
LAST-MODIFIED:20240227T210815Z
UID:1753-1709035200-1709038800@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #1 with Jeffrey Malone
DESCRIPTION:Tuesday Takeaways is a four-part 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 Spring 2024 Tuesday Takeaways series\, we welcome Licensed Mental Health Counselor Jeffrey Malone! Living with NF not only takes a physical toll on patients\, but it can also cause emotional distress for those impacted. Jeffrey Malone\, LMHC\, has a passion for increasing awareness of NF and decreasing the stigma of mental health. This session will focus on common mental health symptoms experienced by those living with NF\, including: depression\, low-self-esteem\, anxiety\, and effective methods of coping with these symptoms. \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (February through May). \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-1-with-jeffrey-malone/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2024/01/Feb-2024.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231212T120000
DTEND;TZID=America/New_York:20231212T130000
DTSTAMP:20260416T070408
CREATED:20230905T172804Z
LAST-MODIFIED:20231213T013956Z
UID:1520-1702382400-1702386000@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #4 with Dr. Jennifer Janusz
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing updates and relevant information with our NF community. \nFor our fourth and final session\, we’re welcoming Dr. Jennifer Janusz—Program Director\, Neurofibromatosis Program\, Colorado Children’s Hospital. Dr. Janusz will speak to the various ways family relationships can be affected by having a loved one with neurofibromatosis – from parents/partners to sibling relationships. \nRegister Here \nThank you to all who have tuned in for our Tuesday Takeaway series this fall—keep an eye out for another series in the spring!
URL:https://www.nfnortheast.org/event/tuesday-takeaway-session-4-with-dr-jennifer-janusz/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2023/09/Dec.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231114T120000
DTEND;TZID=America/New_York:20231114T130000
DTSTAMP:20260416T070408
CREATED:20230905T171557Z
LAST-MODIFIED:20231116T164508Z
UID:1517-1699963200-1699966800@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #3 with Leah & Dasher Manth
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing updates and relevant information with our NF community. \nFor our third session\, we’re PAWS-itively thrilled to welcome Leah Manth\, MSW & Dasher Manth\, Service Dog Extraordinaire! Leah and Dasher will discuss the benefits that a service dog can provide for patients and families affected by neurofibromatosis. Have you wondered what type of assistance and comfort a service dog can provide? Or how someone might go about applying for one? What the difference is between service\, therapy\, and emotional support dogs? Leah will share her experience\, answer questions\, and much more! \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (September through December). \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-3-with-leah-dasher-manth/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2023/09/Nov.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231017T120000
DTEND;TZID=America/New_York:20231017T130000
DTSTAMP:20260416T070408
CREATED:20230905T151528Z
LAST-MODIFIED:20231017T191355Z
UID:1514-1697544000-1697547600@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #2 with Dr. Rebecca Brown
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing updates and relevant information with our NF community. \nFor our second session\, we’re excited to welcome Dr. Rebecca Brown—Assistant Professor in the Department of Neurology at Mount Sinai Hospital in NYC. She aims to address the following questions: Is it true that skin bumps (skin neurofibromas) in neurofibromatosis type 1 (NF1) start growing because of puberty? Does pregnancy cause more bumps to grow? What about hormonal birth control? Is it safe to take gender affirming hormones? These questions do not have easy or direct answers. Tune in to hear NF expert Dr. Brown dissect the evidence (or lack thereof) for how hormones affect tumors in NF1. \nRegister Here \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (September through December). \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-2-with-dr-rebecca-brown/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2023/09/Oct.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230919T120000
DTEND;TZID=America/New_York:20230919T130000
DTSTAMP:20260416T070408
CREATED:20230905T150459Z
LAST-MODIFIED:20240521T150835Z
UID:1486-1695124800-1695128400@www.nfnortheast.org
SUMMARY:Tuesday Takeaways Session #1 with Dr. David Miller and Katherine Piculell
DESCRIPTION:Tuesday Takeaways is a four-part lunch and learn series! These one-hour educational lunchtime sessions are geared towards sharing updates and relevant information with our NF community. \nFor our first Fall 2023 session\, we’re welcoming Dr. David Miller and Katherine Piculell\, Research Coordinator\, from Boston Children’s Hospital to discuss their study on tumor early detection in NF1 patients. \nRegister Here \nThe goal of the NF1 TED (Tumor Early Detection) Study is to determine whether a blood test can detect malignant peripheral nerve sheath tumors (MPNSTs) in participants with NF1 earlier than the current standard of care. In this session\, Dr. David Miller and his study coordinator\, Katherine Piculell\, will introduce participants to the NF1 TED Study and provide an overview of this exciting observational clinical research study. \nDr. Miller is an Associate Professor of Pediatrics at Harvard Medical School and Director of the Multidisciplinary Neurofibromatosis Clinic and the Neurofibromatosis Research Initiative (NFRI) at Boston Children’s Hospital. Through the NFRI\, he created the international Genomics of MPNST (GeM) Consortium in an effort to characterize the genomic architecture of this rare NF1-related tumor. He is joined by Katherine Piculell\, who has been working in NF research for over 6 years and is the research coordinator for the Neurofibromatosis Research Initiative (NFRI) at Boston Children’s Hospital. \nPlease join us for any or all of these sessions taking place at 12pm via Zoom on one Tuesday of each month (September through December). \nFind more information about our other sessions HERE!
URL:https://www.nfnortheast.org/event/tuesday-takeaways-session-1-with-dr-david-miller-and-katherine-piculell/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2023/08/Sept.png
ORGANIZER;CN="Anne Patterson":MAILTO:apatterson@nfnortheast.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230323T120000
DTEND;TZID=America/New_York:20230323T130000
DTSTAMP:20260416T070408
CREATED:20230310T045121Z
LAST-MODIFIED:20230406T042335Z
UID:1201-1679572800-1679576400@www.nfnortheast.org
SUMMARY:NF Summer Camps: An Information  Session
DESCRIPTION:Please join us for this lunch & learn information session about summer camp opportunities for children with neurofibromatosis (NF). We’re so excited to welcome representatives from Brainy Camps (Camp New Friends) and Double H Ranch\, who will be sharing details about the unique experiences that their camps offer! \nRegistration is required. \nRegister Here \nBrainy Camps’s Camp New Friends: July 16th – July 22nd (ages 7-17) \n**Need-based scholarships are available and payment plans can be arranged \nDouble H Ranch: July 20th – July 24th
URL:https://www.nfnortheast.org/event/nf-camp-information-session/
LOCATION:Zoom
CATEGORIES:Educational Event
ATTACH;FMTTYPE=image/png:https://www.nfnortheast.org/wp-content/uploads/2023/03/NF-Kids-Summer-Camp-Info-Session-WEB.png
ORGANIZER;CN="NF Northeast":MAILTO:info@nfnortheast.org
END:VEVENT
END:VCALENDAR