BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Neurofibromatosis Midwest - ECPv6.15.16//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://www.nfmidwest.org X-WR-CALDESC:Events for Neurofibromatosis Midwest REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/Chicago BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20240310T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20241103T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20250309T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20251102T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20260308T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20261101T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20270314T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20271107T070000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:Australia/Eucla BEGIN:STANDARD TZOFFSETFROM:+0845 TZOFFSETTO:+0845 TZNAME:+0845 DTSTART:20250101T000000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250128T180000 DTEND;TZID=America/Chicago:20250128T190000 DTSTAMP:20260405T131152 CREATED:20250121T174442Z LAST-MODIFIED:20250124T042503Z UID:10000592-1738087200-1738090800@www.nfmidwest.org SUMMARY:Meet Camp NF DESCRIPTION:Learn more about Camp NF (formerly Camp New Friends) at an online meeting on Tuesday\, January 28th. Camp NF is a week-long camp for kids with NF\, held in the beautiful Blue Ridge Mountains of Virginia. It is hosted by Camp Brainy Ridge and directed by the same dedicated team that has run Camp New Friends since 2004. This year\, the camp will take place from July 13 to July 19. \n\n\n\nRegister now (so you don’t forget) at nfmidwest.org/meetcampnf \n\n\n\nIf you’re concerned about affordability\, don’t let that stop you from giving your child this incredible experience. NF Midwest provides funding to help kids from our service area attend (applications are submitted through the camp). URL:https://www.nfmidwest.org/event/meet-camp-nf/ LOCATION:Illinois CATEGORIES:Educational Events,Camp ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/04/Brainy-Camp1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250128T200000 DTEND;TZID=America/Chicago:20250128T210000 DTSTAMP:20260405T131152 CREATED:20250122T153313Z LAST-MODIFIED:20250124T042406Z UID:10000628-1738094400-1738098000@www.nfmidwest.org SUMMARY:NF1 PN Educational Event hosted by Alexion DESCRIPTION:Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN). \n\n\n\nTOPIC: Navigating Stress\, Cultivating WellnessWHO: Katie Jones – Patient Education ManagerWHEN: Tuesday\, January 28\, 2025 – 9:00 PM ET/8:00 PM CT/7:00 PM MT/6:00 PM PTWHERE: VirtualCOST: Free \n\n\n\n\nREGISTER FOR THIS EVENT\n\n\n\n\n\n\n\n\nTo register and/or learn more about events\, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will: \n\n\n\nExplores a variety of techniques for stress management.Examines the triggers and symptoms of stress. \n\n\n\nFor more information about Alexion Programs\, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you\, use the PEM finder at AlexionOneSource.com/pem-finder. \n\n\n\nNF1_Digital Flyer_1.28.2025Download URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-hosted-by-alexion-2/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/08/Alexion-Event-e1737556670206.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250211T200000 DTEND;TZID=America/Chicago:20250211T210000 DTSTAMP:20260405T131152 CREATED:20250122T154253Z LAST-MODIFIED:20250122T161917Z UID:10000629-1739304000-1739307600@www.nfmidwest.org SUMMARY:NF1 PN Educational Event hosted by Alexion DESCRIPTION:Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN). \n\n\n\nTOPIC: Caregivers Need Care\, TooWHO: Regina Zambrano\, MDWHEN: Tuesday\, February 11\, 2025 – 7:00 PM ET/6:00 PM CT/5:00 PM MT/4:00 PM PTWHERE: VirtualCOST: Free \n\n\n\nTo register and/or learn more about events\, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will: \n\n\n\nBe provided a realistic and humanized approach to an often-sensitive topic.Caregivers will be equipped with the information and resources needed to allow them to advocate for their child and their wellness throughout their NF1 journey. \n\n\n\nFor more information about Alexion Programs\, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you\, use the PEM finder at AlexionOneSource.com/pem-finder. \n\n\n\nNF1_Digital Flyer_2.11.2025Download URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-hosted-by-alexion-3/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/08/Alexion-Event-e1737556670206.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250225T180000 DTEND;TZID=America/Chicago:20250225T190000 DTSTAMP:20260405T131152 CREATED:20250211T173245Z LAST-MODIFIED:20250211T173900Z UID:10000631-1740506400-1740510000@www.nfmidwest.org SUMMARY:Clinical Trials for Treating Pain in Schwannomatosis DESCRIPTION:Join us to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis.  We’ll share information on the latest advancements in schwannomatosis pain research from the lab to the clinic\, including information on the tanezumab and STARFISH clinical trials. \n\n\n\nVanessa Merker\, PhD from Massachusetts General Hospital/Harvard Medical School will present\, and take questions about clinical trials for schwannomatosis. \n\n\n\n\nREGISTER URL:https://www.nfmidwest.org/event/clinical-trials-for-treating-pain-in-schwannomatosis/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/02/SWN-Meeting-4.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250327T200000 DTEND;TZID=America/Chicago:20250327T210000 DTSTAMP:20260405T131152 CREATED:20250325T162439Z LAST-MODIFIED:20250325T163448Z UID:10000633-1743105600-1743109200@www.nfmidwest.org SUMMARY:All About NF1\, PN\, and a Treatment Option DESCRIPTION:Please refer to the flyer for information. Presented by Alexion Pharmaceuticals\, Inc. \n\n\n\n\n\n\n\nKOSELUGO Educational Event Flyer_DIGITAL_3.27.2025Download URL:https://www.nfmidwest.org/event/all-about-nf1-pn-and-a-treatment-option/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/04/Koselugo-Alexion-Event-Logo.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250426T170000 DTEND;TZID=America/Chicago:20250426T230000 DTSTAMP:20260405T131152 CREATED:20250401T162218Z LAST-MODIFIED:20250401T163224Z UID:10000634-1745686800-1745708400@www.nfmidwest.org SUMMARY:SamJam Finale! DESCRIPTION:SamJam Benefit Concert Aims to Reach $100\,000 Milestone for NF Research\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nDate: Saturday\, April 26\, 2025Time: 5:30 PM – LateLocation: The Rustic Venues – Girard\, IL \n\n\n\nJoin us for the 10th annual SamJam benefit concert! Having raised over $90\,000 in its first nine editions for NF Midwest\, Inc.\, this year’s event aims to break the $100\,000 mark. All proceeds support vital research grants and support services for those affected by neurofibromatosis in Illinois and five surrounding states. \n\n\n\nEvent Highlights:\n\n\n\n\nDelicious BBQ Dinner featuring smoked brisket and pulled pork with all the trimmings\n\n\n\nFull Cash Bar\n\n\n\nSilent Auction & 50/50 Raffle\n\n\n\nCaribbean Cruise Giveaway (one entry per adult ticket\, additional entries available for purchase)\n\n\n\n\nFeatured Performers:\n\n\n\nClusterPluck (5:30 PM)This southern Illinois four-piece returns after successful shows in 2015\, 2016\, and 2019. They blend bluegrass\, folk\, rock\, jam\, and country. The band features a unique instrumental mix with four-part harmonies. They’ve toured the US and Canada since 2010. Past collaborations include Grammy winners Sam Bush and Del McCoury. \n\n\n\nThe HillBenders (8:00 PM)This Springfield\, Missouri band headlines with their “bluegrass meets rock n’ roll” sound. They’re known for high-energy shows and humor. The HillBenders have toured globally. Rock legend Pete Townshend of The Who has praised their work. \n\n\n\n“We aim to push past the $100\,000 mark this year\,” says organizer Peter Oswald. “Our community has been amazing. We hope everyone will help us again.” \n\n\n\nEnjoy great music while supporting an important cause! URL:https://www.nfmidwest.org/event/samjam-finale/ LOCATION:The Rustic Venues\, 24720 N. Standard City Road\, Girard\, Illinois\, 62640\, United States ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2025/04/SamJam-Finale-Logo.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250429T173000 DTEND;TZID=America/Chicago:20250429T173000 DTSTAMP:20260405T131152 CREATED:20250423T215820Z LAST-MODIFIED:20250423T220613Z UID:10000635-1745947800-1745947800@www.nfmidwest.org SUMMARY:Meet the MEKs: A Power Hour 4NF DESCRIPTION:Learn about both MEK inhibitors\, GOMEKLI and Koselugo\, used to treat plexiform neurofibromas in NF1 with Dr. Shawn Damodharan from the University of Chicago. This is a great opportunity if you want to learn more about the drugs\, or are considering going on one. \n\n\n\n\nREGISTER\n\n\n\n\n\n\nThis is a virtual event. URL:https://www.nfmidwest.org/event/meet-the-meks/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/04/Meet-the-Meks-Power-Hour.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250510T090000 DTEND;TZID=America/Chicago:20250510T130000 DTSTAMP:20260405T131152 CREATED:20250102T162836Z LAST-MODIFIED:20250102T162839Z UID:10000588-1746867600-1746882000@www.nfmidwest.org SUMMARY:2025 Walk4NF Madison\, WI DESCRIPTION:Walk4NF Madison Details\nGet ready for the annual Madison Walk4NF and support those with neurofibromatosis! \nPlus\, NF Midwest is celebrating over 43 years as a chartered non-profit! \n(1) Register and learn much more at Walk4NF Madison as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events. \n(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join. \n(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms will give you everything you need to get started! We’ll be here every step of the way! \n(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!! All this helps to create awareness of neurofibromatosis and the need to support those with it. URL:https://www.nfmidwest.org/event/2025-walk4nf-madison-wi/ LOCATION:Capital Brewery\, 7734 Terrace Avenue \, Middleton\, WI\, 53562\, United States CATEGORIES:Walks 4NF ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/01/Headline-Image-with-white-border-NF-Logo-and-Walk4NF-Madison.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250527T173000 DTEND;TZID=America/Chicago:20250527T173000 DTSTAMP:20260405T131152 CREATED:20250514T191437Z LAST-MODIFIED:20250514T191441Z UID:10000637-1748367000-1748367000@www.nfmidwest.org SUMMARY:Meet MEK Users: A Power Hour 4NF DESCRIPTION:Thinking about starting a MEK inhibitor like KOSELUGO or GOMEKLI for yourself or your child? Already on one and want to connect with others who get it? \n\n\n\nJoin us for Meet MEK Users — a real-talk community conversation where adults with NF1 and parents of kids on MEK inhibitors come together to share what it’s really like. The ups\, the side effects\, the surprises\, and the moments of hope. \n\n\n\nNo doctors. No pressure. Just honest stories from people walking the MEK path. \n\n\n\n\nREGISTER\n\n\n\n\n\n\nThis is a virtual event. URL:https://www.nfmidwest.org/event/meet-mek-users-a-power-hour-4nf/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/05/Meet-MEK-user.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250531T090000 DTEND;TZID=America/Chicago:20250531T130000 DTSTAMP:20260405T131152 CREATED:20250102T172852Z LAST-MODIFIED:20250102T172857Z UID:10000590-1748682000-1748696400@www.nfmidwest.org SUMMARY:2025 Walk4NF Columbia\, MO DESCRIPTION:Walk4NF Columbia Details\nGet ready for the annual Columbia Walk4NF and support those with neurofibromatosis! \nPlus\, NF Midwest is celebrating over 43 years as a chartered non-profit! \n(1) Register and learn much more at Walk4NF Columbia as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events. \n(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join. \n(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms will give you everything you need to get started! We’ll be here every step of the way! \n(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!! All this helps to create awareness of neurofibromatosis and the need to support those with it. URL:https://www.nfmidwest.org/event/2025-walk4nf-columbia-mo/ LOCATION:Stephens Lake Park\, Columbia\, MO\, 2001 E Broadway\, Columbia\, MO\, 65201\, United States CATEGORIES:Walks 4NF ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/01/Headline-Image-with-white-border-NF-Logo-and-Walk4NF-Columbia.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250607T083000 DTEND;TZID=America/Chicago:20250607T130000 DTSTAMP:20260405T131152 CREATED:20250102T174454Z LAST-MODIFIED:20250102T174458Z UID:10000591-1749285000-1749301200@www.nfmidwest.org SUMMARY:2025 Walk4NF Naperville\, IL DESCRIPTION:Walk4NF Naperville Details\nGet ready for the 23rd Naperville Walk4NF – the grandaddy of them all supporting those affected by neurofibromatosis! \nPlus\, NF Midwest is celebrating over 43 years as a chartered non-profit! \n(1) Register and learn much more at Walk4NF Naperville as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events. \n(2) Form a team with your family and friends. Think of a creative team name or use your last name and elect a captain who will be responsible for exchanging information with team members. Or choose an existing team to join. \n(3) Create a fundraising page to start raising funds and awareness for NF! Ask your co-workers and neighbors to help you reach your goals. Printable Forms will give you everything you need to get started! We’ll be here every step of the way! \n(4) Raise awareness and funds by sharing your page and story in every way possible. Social media for sure!! BUT don’t forget about email and snail mail!! All this helps to create awareness of neurofibromatosis and the need to support those with it. URL:https://www.nfmidwest.org/event/2025-walk4nf-naperville-il/ LOCATION:Grand Pavilion @ Riverwalk Park – Naperville\, 912 Honorary Sindt Memorial Ct\, Naperville\, Illinois\, 60540\, United States CATEGORIES:Walks 4NF ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/12/Headline-Image-with-NF-Logo-and-Walk4NF-Naperville.png ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250620T180000 DTEND;TZID=America/Chicago:20250620T200000 DTSTAMP:20260405T131152 CREATED:20250529T182113Z LAST-MODIFIED:20250529T183635Z UID:10000638-1750442400-1750449600@www.nfmidwest.org SUMMARY:Neurofibromatosis and a Portrait of 1 in 3\,000: Ashok Shrestha’s Transformation DESCRIPTION:Neurofibromatosis and a Portrait of 1 in 3\,000: Ashok Shrestha’s Transformation is a powerful exhibition featuring nine works of printmaking\, drawing\, and painting by artist Rachel Mindrup\, chronicling the medical journey and personal resilience of Ashok Shrestha\, a young man from Nepal living with NF. \n\n\n\nIn 2016\, Ashok began fundraising to travel to the U.S. for life-altering surgery after NF caused significant facial disfigurement. He arrived in Chicago in late 2017 to undergo a series of complex procedures led by renowned reconstructive surgeon Dr. McKay McKinnon. These surgeries included cranial reconstruction and the placement of a prosthetic eye\, made possible by over $70\,000 in grassroots donations organized by Mindrup and community partners. \n\n\n\nMindrup\, an associate professor at Creighton University and the Richard L. Deming\, MD Endowed Chair in Medical Humanities\, met Ashok while exhibiting her NF awareness portraits in Nebraska. She has painted over 110 portraits as part of her ongoing series\, Many Faces of Neurofibromatosis\, using art to elevate stories\, raise awareness\, and foster empathy. \n\n\n\n\n\n\nINFO AND REGISTRATION URL:https://www.nfmidwest.org/event/neurofibromatosis-and-a-portrait-of-1-in-3000-ashok-shresthas-transformation/ LOCATION:International Museum of Surgical Sciences\, 1524 North Lake Shore Dr\, Chicago\, Illinois\, 60610 CATEGORIES:NF Get Togethers ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2025/05/Ashok-Exhibit.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250731T180000 DTEND;TZID=America/Chicago:20250731T180000 DTSTAMP:20260405T131152 CREATED:20250714T194117Z LAST-MODIFIED:20250714T212525Z UID:10000641-1753984800-1753984800@www.nfmidwest.org SUMMARY:NF1 PN Educational Event hosted by Alexion DESCRIPTION:Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN). \n\n\n\nTOPIC: All about NF1 PN and a treatment optionWHO: Regina Zambrano\, MDWHEN: Thursday\, July 31\, 2025 – 7:00 PM ET/6:00 PM CT/5:00 PM MT/4:00 PM PTWHERE: VirtualCOST: Free \n\n\n\nTo register and/or learn more about events\, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will learn more about: \n\n\n\nNF1 PN and a treatment option \n\n\n\nSupport for families taking Koselugo \n\n\n\nHow Koselugo can help \n\n\n\nFor more information about Alexion Programs\, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you\, use the PEM finder at AlexionOneSource.com/pem-finder. URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-jan/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2025/07/Koselugo-Alexion-Virtual-Event.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250801T180000 DTEND;TZID=America/Chicago:20250801T200000 DTSTAMP:20260405T131152 CREATED:20250714T192613Z LAST-MODIFIED:20250714T205250Z UID:10000639-1754071200-1754078400@www.nfmidwest.org SUMMARY:Neurofibromatosis and a Portrait of 1 in 3\,000: Ashok Shrestha’s Transformation DESCRIPTION:Join NF Midwest\, NF physicians\, the NF community\, and others in celebrating the work of artist Rachel Mindrup and the courage of Ashok Shrestha. \n\n\n\nYou’re invited to a special evening reception at the International Museum of Surgical Science for the powerful exhibit: \n\n\n\n“Neurofibromatosis and a Portrait of 1 in 3\,000: Ashok Shrestha’s Transformation.” \n\n\n\nThrough a series of portraits by acclaimed artist Rachel Mindrup\, this exhibit captures the evolving story of Ashok Shrestha\, a man living with NF1. It’s an intimate and moving exploration of identity\, visibility\, and strength in the face of NF. \n\n\n\nThis event is FREE and open to all. Guests will also have full access to explore the museum’s galleries (a $25 value). Wine\, beer\, soda\, and water will be available. Children are welcome. \n\n\n\nSeveral NF physicians will be attending and may take questions\, offering a chance for meaningful connection between medical professionals and the community. \n\n\n\nLet’s gather to reflect\, connect\, and honor the combining of art\, medicine\, and individuals that make the NF story visible. \n\n\n\n\nINFO AND REGISTRATION URL:https://www.nfmidwest.org/event/neurofibromatosis-and-a-portrait-of-1-in-3000-ashok-shresthas-transformation-2/ LOCATION:International Museum of Surgical Sciences\, 1524 North Lake Shore Dr\, Chicago\, Illinois\, 60610 CATEGORIES:NF Get Togethers ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/07/Art-Exhibit-Website-Event-Page.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250802T083000 DTEND;TZID=America/Chicago:20250802T140000 DTSTAMP:20260405T131152 CREATED:20250714T194705Z LAST-MODIFIED:20250714T210345Z UID:10000642-1754123400-1754143200@www.nfmidwest.org SUMMARY:NF1 Family Symposium at Lurie Children's Hospital DESCRIPTION:Topics:Basics of NF1\, Research Updates\, Genetic Counseling in NF\, and Neuropsychology\, IEP’s\, and Social Work in NF. URL:https://www.nfmidwest.org/event/nf1-family-symposium/ LOCATION:Ann & Robert H Lurie Children’s Hospital\, 225 E Chicago Ave\, Chicago\, Illinois\, 60611 CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/07/Lurie-NF1-Family-Day.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250821T210000 DTEND;TZID=America/Chicago:20250821T210000 DTSTAMP:20260405T131152 CREATED:20250714T195007Z LAST-MODIFIED:20250714T211316Z UID:10000640-1755810000-1755810000@www.nfmidwest.org SUMMARY:NF1 PN Educational Event hosted by Alexion DESCRIPTION:Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN). \n\n\n\nTOPIC: Advocating for Your ChildWHO: Katie Jones\, PEMWHEN: Thursday\, August 21\, 2025 – 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PTWHERE: VirtualCOST: Free \n\n\n\nTo register and/or learn more about events\, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will: \n\n\n\nExplore ways to support your child in school and healthcare settings\, including gaining more information about individualized education programs (IEPs). \n\n\n\n \n\n\n\nFor more information about Alexion Programs\, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you\, use the PEM finder at AlexionOneSource.com/pem-finder. URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-hosted-by-alexion-4/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/07/Alexion-Virtual-Educational-Event.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20250921T060000 DTEND;TZID=America/Chicago:20250921T180000 DTSTAMP:20260405T131152 CREATED:20250822T142555Z LAST-MODIFIED:20250822T142559Z UID:10000646-1758434400-1758477600@www.nfmidwest.org SUMMARY:2025 North Shore Century Ride DESCRIPTION:A Collaboration with Children’s Tumor Foundation. The NSC ride is organized by the Evanston Bicycle Club. \n\n\n\n\n\n\n\n\n\nJoin the NF Midwest and CTF on September 15 for the 39th annual North Shore Century — Chicagoland’s premiere cycling event. Ride through beautiful neighborhoods\, view unique architectural treasures\, and feel the refreshing breezes of Lake Michigan. Choose between four “century” distances – Classic\, Metric\, Half or Quarter – and enjoy a fully supported ride featuring fabulous food\, mechanical support\, and on-course SAG vehicles – all while making a difference for those living with NF. And as a charity rider\, you’ll save 10% on race registration. The race will be capped at 2\,400 riders\, so sign up today! \n\n\n\nREGISTRATION PROCESS\n\n\n\nSign up to join the NF Midwest Team and THEN for the ride. Use the code CTFNSC to receive a 10% discount on the registration fee of $40 (this goes up if you register after September 8th). However\, the number of riders is capped at 2\,400 so spots could be gone soon! \n\n\n\n\n\n\n\n\n\nSTEP 1 \n\n\n\n\nRegister with NF Midwest – this will give you support in your efforts and allow you to create fund raising page. \n\n\n\nGo to https://give.nfmidwest.org/NorthShore2024\n\n\n\nClick REGISTER\n\n\n\nJoin or start your own team.\n\n\n\nFill out all registration detailsand check out\n\n\n\n\n\n\nSTEP 2 \n\n\n\n\nRegister for the North Shore Century Ride\n\n\n\nGo to North Shore Century 2024 – Sunday\, Sept. 15 (active.com)\n\n\n\nClick Register Now! You will have to pay a separate fee to the bike club to participate. \n\n\n\nSelect Registration type(Adult or Child)\n\n\n\nEnter all registration details\n\n\n\n\n\nPDF WITH MORE INFO TO PRINT AND SHARE URL:https://www.nfmidwest.org/event/2025-north-shore-century-ride/ LOCATION:Illinois CATEGORIES:Fundraisers ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2025/08/North-Shore-Website-Calendar-Image-1.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20251001T080000 DTEND;TZID=America/Chicago:20251130T180000 DTSTAMP:20260405T131153 CREATED:20250822T153358Z LAST-MODIFIED:20251029T035202Z UID:10000647-1759305600-1764525600@www.nfmidwest.org SUMMARY:Champions of the Fall DESCRIPTION:START YOUR CREW OR JOIN ONE TODAY!\n\n\n\n\n\n\n\n\nTwo Months. One Champion. Rally Your Crew! \n\n\n\nA maximum of five individual or crews may sign up for NF Midwest’s Champions of the Fall (COTF) fundraising and awareness campaign kicking off on October 1st. The goal is to raise funds and awareness from October 1st through November 30th. The difference is that participants may create events and NF Midwest will guide and support them. They may also participate in opportunities provided by NF Midwest.  \n\n\n\nConsider starting creating a crew at work\, school\, in you neighborhood\, or with fun friends and family! \n\n\n\nLearn about why you should participate and how it works below! \n\n\n\nLet’s work together to create a brighter future for those affected by NF. \n\n\n\nWhy Participate?\nMake a Difference: Your contributions will fund critical research and support programs for individuals affected by NF. \n\n\n\nConnect with Your Community: Build lasting relationships while working towards a common goal. \n\n\n\nHave Fun: Enjoy a variety of engaging events and activities while making a difference. \n\n\n\nBe Recognized: Top fundraisers will receive special recognition and prizes. \n\n\n\n\n\n\n\n\nHow It Works!\nAssemble Your Crew: Starting October 1st\, rally your friends and family to form your COTF crew! The campaign runs until November 30th\, so plenty of time to make a BIG impact. \n\n\n\nJoin the Fun & Fundraise: Throughout the campaign\, NF Midwest will provide support and ideas\, and ways to raise funds and awareness. Each crew and fundraiser will have their own page to direct donors to. \n\n\n\nHost Your Own Events: Get creative with your fundraising! Host a football viewing party\, throw a Halloween bash\, or even go trick-or-treating 4NF! Whatever sparks joy\, make it your own and have fun while supporting a great cause! \n\n\n\nBoost Your Walk4NF team: If you’re gearing up for a Walk4NF in 2026\, funds raised during your efforts can be added to your Walk4NF efforts once you register for a walk. \n\n\n\nCrown a Champion: One crew will be crowned the Champion of the Fall\, a title that will surely include prizes and pride. \n\n\n\n\n\n\n\n\nInterested in Participating? Let Us Know With This Form\, and We’ll Help You!\n\n \n \n DIY Interest Form\n Use this form to let us know if you have an interest in participating in the Champions of the Fall or creating a DIY fundraiser. Helping NF Midwest fundraise during October and November to raise funds using the Do It Your WAY method will help to support NF Midwest and its programs of education\, outreach\, and support. \n \n URLThis field is for validation purposes and should be left unchanged.Name(Required)\n \n \n \n First\n \n \n \n \n Last\n \n \n Why are you interested in participating in the Champions of Fall or in creating a DIY Event?(Required)Phone(Required)Email(Required)\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\n\n\n\n\nSTART YOUR CREW OR JOIN ONE TODAY! URL:https://www.nfmidwest.org/event/champions-of-the-fall-2/ LOCATION:Illinois CATEGORIES:Fundraisers,Champions of the Fall ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/08/Champions-of-the-Fall-Facebook-Image-for-social-media-sharing.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20251025T080000 DTEND;TZID=America/Chicago:20251025T160000 DTSTAMP:20260405T131153 CREATED:20250310T171636Z LAST-MODIFIED:20251023T181305Z UID:10000632-1761379200-1761408000@www.nfmidwest.org SUMMARY:2025 iNFo Fair DESCRIPTION:REGISTRATION AND DONATION PAGE\n\n\n\n\n\n\n\n\n\n\n \n\n\n\nThe theme this year is being “Be Proactive\, Be Informed\, Be Heard!“ \n\n\n\nJoin us for an all-day iNFo Fair in Naperville\, Illinois\, on Saturday\, October 25th. Don’t miss this unique opportunity to learn. It’s also a great chance to connect with others\, which is essential for building support. \n\n\n\n \n\n\n\n\n\nLOCATION: \n\n\n\n\n\nNorthern Illinois University Extension Building1120 East Diehl RoadNaperville\, IL 60563 \n\n\n\n\n\n\n\nTIME: \n\n\n\n\n\nContinental Breakfast starts at 8:00 am CSTSessions start at 9:00 am CSTThe day will end at approximately 4:00 pm CST \n\n\n\n\n\n\n\nCOST: \n\n\n\n\n\n$25 for Adult$10 Children ages 5 to 17Kids will enjoy activities in the Kids Group \n\n\n\n\n\n\n\n\n\nTOPICS/SESSIONS\n\n\n\n\nFINAL SCHEDULE\n\n\n\n\n\n\n\n\nGENERAL TOPICS\nInteractive Session: Learning about NF and Getting to Know You!We’re kicking off the iNFo Fair with something new—a relaxed\, interactive session that helps us learn with and about our community. Using an easy-to-join app\, we’ll ask questions like what brought you here\, what you hope to learn\, and how NF touches your life. Then we’ll dive into a light NF knowledge quiz—with answers and a few prizes along the way! It’s a comfortable way to start the day\, learn together\, and connect with others who understand NF. Ohhh…and there will be some prizes! \n\n\n\nPatient & Care Partner Panel: Proactive in ActionHear directly from individuals living with NF and the people who support them. This panel will share real experiences of being proactive—whether in seeking treatments\, building resilience\, or finding resources. Learn from their stories\, gain practical insights\, and connect through shared lessons that can help guide your own NF journey. \n\n\n\nProductive Conversations with Healthcare Providers Clear\, confident communication is one of the most powerful tools you have in managing your health. This interactive presentation will help you build the skills to make the most of every appointment. Learn the key components of productive conversations\, discover strategies to ensure your questions and concerns are heard\, and explore ways to work effectively with physicians and the broader care team. You’ll leave with practical tips and resources to support stronger\, more collaborative relationships with your healthcare providers. \n\n\n\nGenetic Testing: Taking a Proactive StepGenetic testing can be an important way to take charge of your NF journey. In this session\, Jordyn Prell\, a genetic counselor from Children’s Hospital of Wisconsin\, we’ll help us explore how to access testing\, what it costs\, and whether it’s the right choice for you or your family. Learn the benefits\, limitations\, and what results can reveal—so you’re equipped with the knowledge to make informed\, proactive decisions. \n\n\n\nScans in NF: The Great MRI DebatesWhole-body MRIs? Baseline MRIs? Not everyone agrees. In this session\, Dr. Listernick from Lurie Children’s Hospital\, will debate the pros and cons of different approaches\, while also giving a clear overview of the types of scans used in NF and when they’re most helpful. You’ll leave with balanced perspectives and practical knowledge to guide proactive decisions about imaging. \n\n\n\n \n\n\n\n\nNF1 BREAKOUT TOPICS\n\nLet’s Talk Tumors: Understanding and Taking Action \n\n\n\nPresented by Shawn Damodharan\, DO; Director of Pediatric Neuro-Oncology at the University of Chicago and Nicholas Pytel\, DO; pediatric neuro-oncologist from the University of Wisconsin. \n\n\n\nTumors are one of the most common—and most complex—parts of living with NF type 1. This in-depth session Drs. Shawn Damodharan and Nicholas Pytel discuss the different types of tumors\, treatment options\, and what we know about when and why they may appear\, including during life stages such as adolescence or pregnancy. We’ll also look at factors like injuries and genetic “second hits.” By arming yourself with knowledge\, you can better understand what’s happening in the body and be proactive in making care decisions. \n\n\n\n\n\n\n\n\n\n\n\n\n\nNeuropsychological Testing in NF1: Tools for Learning and Living \n\n\n\nDr. Jonathan Mietchen\, pediatric neuropsychologist from the University of Wisconsin\, will guide us through what neuropsychological testing is and how it works. This testing explores how the brain functions—highlighting learning\, memory\, attention\, and social skills. Results can reveal both strengths and challenges\, giving individuals and families practical tools to be proactive in school\, work\, and daily life. With this knowledge\, testing can open doors to greater support\, confidence\, and resilience. \n\n\n\n\n\n\n\n\n\nNF2 BREAKOUT TOPICS\n\nThe NF2-related schwannomatosis session will be presented byJustin Jordan\, MD\, MPH\, FAAN \n\n\n\nThe Basics of NF2-related SchwannomatosisDr. Jordan will lead a discussion on tumor types\, symptoms\, genetics\, and clinical care recommendations in NF2-SWN. Followed by a Q&A session. \n\n\n\nTreatment Approaches by Tumor Type in NF2-related SchwannomatosisDr. Jordan will discuss both local and systemic therapies for the treatment of specific tumors\, including published and ongoing research. \n\n\n\nOpen Q&AAt the end of the day there will be some time to ask other NF2-SWN questions and to share with each other. \n\n\n\n\n\n\n\n\n\nPRESENTER BIOS\n\n\n\nSUDARSHAWN DAMODHARAN\, DO – iNFo Fair Co-Chair \n\n\n\n\nDr. Damodharan is the Director of Pediatric Neuro-Oncology at the University of Chicago and the Chicagoland Children’s Health Alliance—a partnership between Advocate Children’s Hospitals\, Endeavor Health System\, and the University of Chicago. He provides specialized clinical care for children and young adults with brain tumors\, neurofibromatosis type 1 (NF1)\, and NF2-related schwannomatosis. \n\n\n\nHis research focuses on advancing the understanding and development of novel therapeutic strategies for pediatric brain tumors. In addition\, he is committed to exploring the epidemiology and long-term outcomes of patients with NF1 and NF2-related schwannomatosis\, with the goal of improving both treatment options and quality of life. \n\n\n\n\nNICHOLAS PYTEL\, DO – iNFo Fair Co-Chair \n\n\n\n\nDr. Nicholas Pytel is an assistant professor in the Division of Hematology\, Oncology\, Transplant\, and Cellular Therapy at the University of Wisconsin School of Medicine and Public Health. He co-directs the Pediatric Brain Tumor Program at UW Health and is the medical director of the Pediatric Neuro-Oncology and Pediatric Neurocutaneous Disorders multidisciplinary clinics at UW Health. He also heads the Pediatric Molecular Targeted Radiotherapy Program at UW Health. He is the institutional responsible investigator of neuroscience for UW Carbone Cancer Center in the Children’s Oncology Group. He is involved in the Society of Neuro-Oncology\, the International Symposium on Pediatric Neurology-Oncology\, and the American Society of Pediatric Hematology/Oncology. He has attended and presented research at these conferences. His research interests involve pediatric central nervous system tumors\, targeted therapy\, and issues affecting those patients. \n\n\n\n\nJOE BOOE\, PEM \n\n\n\n\nJoe Booe serves as a Patient Education Manager (PEM) at Alexion\, supporting individuals and families affected by Neurofibromatosis Type 1 with Plexiform Neurofibromas (NF1 PN). In this role\, he provides education\, resources\, and local community connections to help patients better understand and manage their condition. \n\n\n\nJoe is passionate about his work\, sharing: “Patients living with rare diseases face many challenges that impact their daily lives. I’m inspired by their stories and welcome the opportunity to provide educational resources to help patients effectively manage their condition.” \n\n\n\nThrough Alexion’s OneSource™ program\, Joe connects patients with information about their disease\, guidance on treatment\, opportunities to engage with others in the rare disease community\, and events that provide education and support \n\n\n\n\nJUSTIN JORDAN\, MD\, MPH\, FAAN \n\n\n\n\nDr. Jordan is Associate Professor of Neurology with a secondary appointment in the Peter O’Donnell Jr. Brain Institute at the University of Texas Southwestern Medical Center in Dallas\, Texas. He serves as Head of the Neuro-Oncology Section\, where he also runs a comprehensive clinic for adult patients affected by NF1 and schwannomatosis. Dr. Jordan also has a long history of leading research efforts related to NF1 and schwannomatosis\, including work on interventional clinical trials for cutaneous neurofibromas\, plexiform neurofibromas\, and gliomas in NF1\, all tumor types in NF2-related schwannomatosis\, and chronic pain in non-NF2-related schwannomatosis. He has collaborated or led research investigations on novel imaging techniques including longitudinal whole body MRI scans\, radiomics\, and high-frequency ultrasound to advance our understanding of tumor behavior over time. Finally\, Dr. Jordan has a strong interest in improving quality of care for patients affected by NF1 and schwannomatosis; he has published on both physician and patient-reported care patterns as they relate to published care recommendations\, and is engaged in collaborative work at multiple levels to improve care for all. He serves as chair of the Scientific Advisory Committee for Neurofibromatosis Network\, and is a member of the Clinical Care Advisory Board within the Children’s Tumor Foundation. \n\n\n\n\nROBERT LISTERNICK\, MD\n\n\n\n\nRobert Listernick\, MD is a General Academic Pediatrician in the Division of Advanced General Pediatrics and Primary Care. He is a Professor at Northwestern University Feinberg School of Medicine in the Department of Pediatrics. He is director of the Diagnostic and Consultation Service and Co-Director of the Neurofibromatosis Clinic which he cofounded in 1985. He obtained his BA in Biology and English from the University of Rochester and his medical degree from University of Pennsylvania School of Medicine. He performed his residency at The Children’s Memorial Hospital and has been on staff since 1982.His research has focused primarily on optic pathway tumors in children with NF-1. \n\n\n\n\nJONATHAN MIETCHEN\, PHD \n\n\n\n\nJon Mietchen is a pediatric neuropsychologist and an assistant professor in the Department of Neurology at the University of Wisconsin School of Medicine and Public Health. \n\n\n\nHe completed his PhD in Neuropsychology at Brigham Young University. He completed his residency at the University of Kansas School of Medicine and he completed his fellowship at the University of Wisconsin School of Medicine and Public Health. \n\n\n\nJon specializes in cognitive and neuropsychological evaluations for children and adolescents with medical disorders\, including NF. These assessments look for strengths and challenges a child may have in memory\, attention\, executive function skills\, and learning. \n\n\n\nHe has presented research related to neuropsychological screening and NF1 at the Children’s Tumor Foundation and the Society for Neuro-oncology. \n\n\n\n\nJORDYN PRELL\, MS\, CGC \n\n\n\n\nJordyn Prell joined the Medical College of Wisconsin in June 2020. She obtained her Master of Science degree in Genetic Counseling in May 2020 at Virginia Commonwealth University. She is a board-certified genetic counselor through the American Board of Genetic Counseling. As a pediatric genetic counselor\, Jordyn’s clinical focus is serving patients and their families through our Neurofibromatosis/RASopathies Clinic as well as Children Wisconsin’s Multidisciplinary Cleft Lip and Palate team. As an educator\, Jordyn strives to create a welcoming and interactive learning environment that allows students to develop personal and professional skills that are necessary to thrive in the field of genetic counseling. \n\n\n\n\n\n\nSponsors\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nContact TED for Sponsorship Opportunities! \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nHOTEL INFO\n\n\n\nA small block of rooms has been reserved at the Courtyard by Marriott for $114 per night. Rooms must be reserved before the number of blocked rooms runs out and by October 3rd to get that rate (whichever comes first!) \n\n\n\nThis hotel is within walking distance of the iNFo Fair Venue. \n\n\n\nPlease use the link www.nfmidwest.org/2025hotel to make your reservation. \n\n\n\nCourtyard by Marriott Naperville1155 Diehl RoadNaperville\, IL 60563 \n\n\n\n\n\n\n\n\n\n\n\n\nFAQ’S\n\n\n\nWhat is the cost of the event?Tickets are $25 for adults and $15 for kids. Your ticket includes a continental breakfast\, lunch\, and an afternoon snack. \n\n\n\nIs financial assistance available?Yes! If you’re traveling from more than 90 miles away\, you can use promo code 90MILES to have your registration fee waived. If you need additional help\, please contact us at info@nfmidwest.org. \n\n\n\nIs there public transportation from the city to the venue?Yes! You can take the Metra to Naperville\, and the Pace bus stops near the venue. If you need help getting from the city or from the train station to the event\, let us know—we’ll do our best to make special arrangements. \n\n\n\nWill there be captioning for people with hearing loss?There will be captioning during the general session which will continue in to the NF2 breakout session. There will not be captioning in the NF1 sessions\, unless it is determined that someone needs it. \n\n\n\nIs there a hotel nearby?Yes. There are several hotels in the area. We recommend the Courtyard by Marriott Naperville at 1155 Diehl Road. We have a limited number of rooms in a block until October 3rd\,  for $114\, and we will be hosting a Friday night pizza social at this hotel. \n\n\n\nWhere is the event located?The event will be held at the NIU Building\, 1120 E Diehl Rd\, Naperville\, IL. \n\n\n\nCan children attend?Yes! Children ages 5 to 17 are welcome in our supervised kids’ group. \n\n\n\nIs there a virtual option?We’re sorry—there are no plans for a virtual option this year. \n\n\n\nWill the sessions be recorded?We hope to record the sessions and share them afterward\, pending permission from the presenters. URL:https://www.nfmidwest.org/event/2025-info-fair/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/04/iNFo-Fair-General-no-background.png ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20251026T180000 DTEND;TZID=America/Chicago:20251126T180000 DTSTAMP:20260405T131153 CREATED:20251029T034035Z LAST-MODIFIED:20251029T035309Z UID:10000650-1761501600-1764180000@www.nfmidwest.org SUMMARY:$500 Wednesday Windfall DESCRIPTION:🎁 Get ready for a little holiday windfall! \n\n\n\nOn Wednesday\, November 26th—just before Thanksgiving\, Black Friday\, and Cyber Monday—one lucky winner will take home a $500 Visa gift card to help with holiday expenses or a little extra cheer! \n\n\n\nHere’s how it works:🎟️ Every donation = raffle entries for the $500 Visa card.❤️ Show your support! When you donate\, you can choose a team or fundraiser to receive credit for your gift. It’s a fun way to vote with your dollars and cheer on your favorite family\, friend\, or team.📣 Spread the word! Fundraisers can earn free entries when they share their page link—and when others (or they themselves) use that link to donate! \n\n\n\nIt’s simple: Give\, share\, and you might just win big!Your donation helps people living with neurofibromatosis and schwannomatosis\, and you could head into the holidays $500 richer. \n\n\n\nDonations are accepted until 6 PM CST on the 26th\, and the drawing will run automatically at 6:30 PM CST. \n\n\n\n\nDONATE OR REGISTER A DEDICATEE URL:https://www.nfmidwest.org/event/500-wednesday-windfall/ LOCATION:Illinois CATEGORIES:Fundraisers ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/10/Wednesday-Windfall-Website-event-and-blog-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20251029T190000 DTEND;TZID=America/Chicago:20251029T200000 DTSTAMP:20260405T131153 CREATED:20251009T201208Z LAST-MODIFIED:20251010T193802Z UID:10000648-1761764400-1761768000@www.nfmidwest.org SUMMARY:Transitioning to Adult Care DESCRIPTION:Joe Booe\, Patient Education Manager from Alexion Pharmaceuticals\, will share information about transitioning to adult care. \n\n\n\nObjectives: \n\n\n\n\nExplain how creating a plan for this change can ease the burden.\n\n\n\nDescribe the differences between healthcare for children and adults.\n\n\n\nExplore how to move from pediatric to adult care.\n\n\n\n\n\nREGISTER HERE\n\n\n\n\n\n\nThis is a virtual event. URL:https://www.nfmidwest.org/event/transitioning-to-adult-care/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/04/Transitioning-to-Early-Adulthood-Website-Event-Size-5.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20251210T190000 DTEND;TZID=America/Chicago:20251210T200000 DTSTAMP:20260405T131153 CREATED:20251016T203039Z LAST-MODIFIED:20251204T203622Z UID:10000649-1765393200-1765396800@www.nfmidwest.org SUMMARY:Navigating Stress and Cultivating Wellness DESCRIPTION:Gina Friesl\, Patient Education Manager from Alexion Pharmaceuticals\, will share information about Navigating Stress and Cultivating Wellness. \n\n\n\nObjectives: \n\n\n\n\nExamines the triggers and symptoms of stress\n\n\n\nExplores a variety of techniques for stress management\n\n\n\n\n\nREGISTER HERE\n\n\n\n\n\n\nThis is a virtual event. URL:https://www.nfmidwest.org/event/navigating-stress-and-cultivating-wellness/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/10/Navigating-Stress-Website-Event-Size.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Australia/Eucla:20260105T000000 DTEND;TZID=Australia/Eucla:20260109T235959 DTSTAMP:20260405T131153 CREATED:20250813T202708Z LAST-MODIFIED:20250813T205012Z UID:10000645-1767571200-1768003199@www.nfmidwest.org SUMMARY:Young Leadership Program DESCRIPTION:Are you a passionate young adult looking to make a difference? The NF Young Adult Leadership Program is your chance to step up and become a champion for the NF community. \n\n\n\nThis unique 5-day program is a collaboration between NF Midwest\, The Littlest Tumor Foundation\, and Texas NF. It is designed to equip young adults with the leadership skills and knowledge needed to advocate for NF research and education on Capitol Hill. \n\n\n\nYoung adults will have the opportunity to: \n\n\n\n\nDevelop critical leadership skills: Learn from experts and gain invaluable mentorship.\n\n\n\nAdvocate for NF research: Make your voice heard and drive progress in finding a cure.\n\n\n\nEducate Congress: Meet with lawmakers and share your story to raise awareness about NF. Engaging workshops on leadership and advocacy Meetings with influential members of Congress Briefings in both the House and Senate Visits to Congressional offices \n\n\n\n\nWhat to expect: \n\n\n\n\nEngaging workshops on leadership and advocacy\n\n\n\nMeetings with influential members of Congress\n\n\n\nBriefings in both the House and Senate\n\n\n\nVisits to Congressional offices\n\n\n\n\nWe’re seeking motivated young adults who are ready to make a positive impact. Join us in creating a brighter future for those affected by neurofibromatosis and schwannomatosis. \n\n\n\nThe 2026 program will be held on January 5-9\, 2026 in Washington\, D.C. \n\n\n\nApply today and become part of the next generation of NF leaders! Scholarships are available to qualified applicants. URL:https://www.nfmidwest.org/event/young-leadership-program/ LOCATION:Illinois ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/08/NF-Young-Leadership.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260113T190000 DTEND;TZID=America/Chicago:20260113T200000 DTSTAMP:20260405T131153 CREATED:20251212T171509Z LAST-MODIFIED:20260109T203451Z UID:10000651-1768330800-1768334400@www.nfmidwest.org SUMMARY:Discovering possibilities for neurofibromatosis type 1 (NF1) plexiform neurofibromas in adults. DESCRIPTION:Joe Booe\, Patient Education Manager from Alexion Pharmaceuticals\, will share discovering possibilities for neurofibromatosis type 1 (NF1) plexiform neurofibromas in adults.. \n\n\n\nAt this event\, you will learn more about: \n\n\n\n\nAlexion’s support available for NF1 families\n\n\n\nNF1 and NF1 PN\, especially in adults\n\n\n\nNext steps for patients and caregivers\n\n\n\n\n\nREGISTER HERE\n\n\n\n\n\n\nThis is a virtual event. URL:https://www.nfmidwest.org/event/an-introduction-to-managing-plexiform-neurofibromas-in-nf1/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/12/An-intro-to-managing-NF1-PNs-Website-Event-Size.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260217T190000 DTEND;TZID=America/Chicago:20260217T200000 DTSTAMP:20260405T131153 CREATED:20260128T035618Z LAST-MODIFIED:20260212T173037Z UID:10000653-1771354800-1771358400@www.nfmidwest.org SUMMARY:Neurofibromatosis Type 1 (NF1) Plexiform Neurofibromas in Adults: A Closer Look at Koselugo (selumetinib) DESCRIPTION:Join us as Dr. Jacob Henderson presents a more in-depth look at Koselugo for the treatment of plexiform tumors in neurofibromatosis type 1. Dr. Henderson is a specialist in pediatric hematology-oncology at Mary Bridge Children’s Hospital in Fox Island\, WA. \n\n\n\nAt this event\, you will learn more about: \n\n\n\n\nNext steps for patients and caregivers\n\n\n\nNF1 and NF1 PN\, especially in adults\n\n\n\nAlexion’s support available for NF1 families\n\n\n\n\n\nREGISTER HERE\n\n\n\n\n\n\nThis is a virtual event. URL:https://www.nfmidwest.org/event/neurofibromatosis-type-1-nf1-plexiform-neurofibromas-in-adults-a-closer-look-at-koselugo-selumetinib/ LOCATION:Illinois CATEGORIES:Educational Events ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2026/01/An-intro-to-managing-NF1-PNs-Website-Event-Size-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260314T083000 DTEND;TZID=America/Chicago:20260314T130000 DTSTAMP:20260405T131153 CREATED:20260125T164523Z LAST-MODIFIED:20260310T162537Z UID:10000652-1773477000-1773493200@www.nfmidwest.org SUMMARY:Lexington\, KY - Community Conversation DESCRIPTION:Listen and learn together\, with experts and each other. \n\n\n\n\n\nThe morning will include: \n\n\n\n\nContinental breakfast and lunch\n\n\n\nAn ask me anything Q&A\n\n\n\nShort educational session\n\n\n\nTime to socialize and meet others\n\n\n\n\nProfessionals attending the event include: \n\n\n\n\nDr. Donita Lightner\, MD – Pediatric Neuro-oncologist\n\n\n\nDr. Michael Hendricks\, MD – Pediatric Neurologist\n\n\n\nKim Osborne – Patient Services\n\n\n\nAlyssa Frye\, PsyD – Clinical Psychologist\, UKY\n\n\n\nCatherine Garcia Stangherlin\, MD – Adult Neurologist/Neuro-oncologist \n\n\n\n\n\nRegister\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nJoin us for a morning of learning and sharing at Shriners Children’s Hospital in Lexington\, KY\, on Saturday\, March 14th. Experts from the University of Kentucky\, including the team at the NF clinic there will be in had to share their professional knowledge. Equally important\, we will share experiences with each other. \n\n\n\nThere will be some educational sessions\, material to take home\, awareness merchandise\, and an Ask Me Anything Q&A. The morning will also include a continental breakfast and end with lunch. \n\n\n\nProfessionals Attending Include: Dr. Donita Lightner\, MD – Pediatric Neuro-Oncologist; Dr. Michael Hendricks\, MD – Pediatric Neurologist; Kim Osborne – Patient Services; Alyssa Frye\, PsyD – Clinical Psychologist\, UKY; Catherine Garcia Stangherlin\, MD – Adult Neurologist / Neuro-Oncologist. \n\n\n\nThank You to our Sponsors URL:https://www.nfmidwest.org/event/ky-community-conversation/ LOCATION:Shriner Children’s Hospital\, 110 Transcript Ave\, Lexington\, KY\, 40508 CATEGORIES:Educational Events,NF Get Togethers ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2026/01/Community-Conversations-Website-668x400-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260324T190000 DTEND;TZID=America/Chicago:20260324T200000 DTSTAMP:20260405T131153 CREATED:20260306T215818Z LAST-MODIFIED:20260306T225625Z UID:10000666-1774378800-1774382400@www.nfmidwest.org SUMMARY:NF1 Peer Conversations DESCRIPTION:Join other adults living with NF1 for NF1 Peer Conversations—an online\, supportive space to connect\, share experiences\, and talk openly about life with NF1. Some conversations will focus on specific topics or feature an expert guest\, while always leaving time for open discussion and questions. These conversations are currently held on the fourth Tuesday of each month. Visit our Events page for additional NF1 Peer conversations and updated dates. \n\n\n\n\nRegistration URL:https://www.nfmidwest.org/event/nf1-peer-conversations/2026-03-24/ LOCATION:Illinois CATEGORIES:Chat and Support ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2026/03/Peer-Conversations-668X400-Website.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260413T190000 DTEND;TZID=America/Chicago:20260413T200000 DTSTAMP:20260405T131153 CREATED:20260306T212951Z LAST-MODIFIED:20260306T225729Z UID:10000662-1776106800-1776110400@www.nfmidwest.org SUMMARY:NF Parent Conversations DESCRIPTION:Join our Parent Community Conversations—a welcoming online space for parents and caregivers affected by NF to connect with others who understand. Some conversations may be predetermined around a specific topic\, while others offer open discussion and shared support. These conversations are currently held on the second Monday of each month. Visit our Events page for additional parent conversations and updated dates. We invite people with any type of NF to attend.  \n\n\n\n\nRegistration URL:https://www.nfmidwest.org/event/nf-parent-conversations/2026-04-13/ LOCATION:Illinois CATEGORIES:Chat and Support ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2026/03/Parent-Conversations-668X400-Website.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260421T190000 DTEND;TZID=America/Chicago:20260421T200000 DTSTAMP:20260405T131153 CREATED:20260328T004829Z LAST-MODIFIED:20260401T220353Z UID:10000670-1776798000-1776801600@www.nfmidwest.org SUMMARY:7 Simple Strategies for Sibling Support DESCRIPTION:Siblings of children with Neurofibromatosis play important roles in their families\, and often experience similar concerns and opportunities as parents. This interactive session by Emily Holl\, Director of the national Sibling Support Project\, will present some common issues that siblings experience and share a handful of simple\, practical strategies for parents to help minimize siblings’ concerns and maximize opportunities to support wellbeing. Local resources will be shared. \n\n\n\nPresenter Emily Holl is the Director of The Sibling Support Project\, the first national program dedicated to the life-long and ever-changing concerns of millions of siblings of people with developmental and health concerns. Learn more at www.siblingsupport.org.  \n\n\n\nREGISTER BELOW\n\n\n\n \n \n Step 1 of 2\n \n \n 50%\n \n \n Contact DetailsFirst Name(Required)Middle InitialLast Name(Required)Email(Required)\n \n Enter Email\n \n \n \n Confirm Email\n \n \n \n PhoneAddress \n \n \n Street Address\n \n \n Address Line 2\n \n \n City\n \n \n State / Province / Region\n \n \n ZIP / Postal Code\n \n \n Country\n AfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire\, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo\, Democratic Republic of theCook IslandsCosta RicaCroatiaCubaCuraçaoCyprusCzechiaCôte d'IvoireDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea\, Democratic People's Republic ofKorea\, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine\, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRomaniaRussian FederationRwandaRéunionSaint BarthélemySaint Helena\, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania\, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkmenistanTurks and Caicos IslandsTuvaluTürkiyeUS Minor Outlying IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuelaViet NamVirgin Islands\, BritishVirgin Islands\, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabweÅland Islands \n \n \n \n \n \n \n \n \n \n \n Event DetailsGenderMaleFemaleNon-binaryAgenderMy gender isn't listedPrefer Not to AnswerBirth DateMonthMonth123456789101112DayDay12345678910111213141516171819202122232425262728293031YearYear202720262025202420232022202120202019201820172016201520142013201220112010200920082007200620052004200320022001200019991998199719961995199419931992199119901989198819871986198519841983198219811980197919781977197619751974197319721971197019691968196719661965196419631962196119601959195819571956195519541953195219511950194919481947194619451944194319421941194019391938193719361935193419331932193119301929192819271926192519241923192219211920If you prefer you may choose January 1 and the year of your birth. This information helps with programming.How are you impacted by NF? (select all that apply)(Required)\n \n I am affected\n \n \n I have an affected child\n \n \n I have someone else who is affected\n \n \n I prefer not to say\n \n \n Not applicable\n What type of NF are you impacted by?(Required)\n \n \n Neurofibromatosis Type 1 (NF1)\n \n \n \n Neurofibromatosis Type 2 (NF2-SWN\n \n \n \n Other Schwannomatosis (SWN)\n \n \n \n Unknown\n \n \n \n Other\n \n \n \n Not Applicable\n Mobile phoneIf you’d like to receive a text reminder and other updates\, please provide your mobile number.How did you hear about this event?Social MediaNF Midwest EmailTextRefer a FriendFrom PhysicianOther URL:https://www.nfmidwest.org/event/7-simple-strategies-for-sibling-support/ LOCATION:Illinois ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2026/03/OLD-WEBSITE-EVENT-sibling.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20260430T183000 DTEND;TZID=America/Chicago:20260430T190000 DTSTAMP:20260405T131153 CREATED:20260401T194011Z LAST-MODIFIED:20260401T235058Z UID:10000671-1777573800-1777575600@www.nfmidwest.org SUMMARY:Learn About Camp NF @ Brainy Ridge DESCRIPTION:NF Midwest is pleased to share that NF Midwest is hosting a Summer Camp Info Session for parents and caregivers on April 30th from 6:30–7:00 CST / 7:30–8:00 EDT. \n\n\n\nOur annual NF camp is for kids ages 6 – 18 at Brainy Ridge\, located in the beautiful St. George\, VA\, and features a 7-day\, 6-night residential summer camp for children and teens living with neurofibromatosis Type 1\, NF2-related SWN\, and schwannomatosis. \n\n\n\nMedical staff\, including physicians\, nurses\, social workers\, and psychologists\, are on-site 24 hours a day. At Brainy Ridge\, children and teens have the opportunity to learn from peers and mentors and gain a better understanding of NF\, individual strengths\, and self-worth.  URL:https://www.nfmidwest.org/event/learn-about-camp-nf-brainy-ridge/ LOCATION:Illinois CATEGORIES:Camp ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/04/Brainy-Ridge-Logo.png END:VEVENT END:VCALENDAR