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X-WR-CALDESC:Events for Neurofibromatosis Midwest
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240425T183000
DTEND;TZID=America/Chicago:20240425T193000
DTSTAMP:20260408T102812
CREATED:20240104T141048Z
LAST-MODIFIED:20240402T202320Z
UID:10000113-1714069800-1714073400@www.nfmidwest.org
SUMMARY:NF Midwest Parent Group Chat
DESCRIPTION:Designed for parents with a child of any age with NF\, this virtual chat provides a dedicated space for sharing insights and connecting with others who comprehend the unique joys and concerns of having a child with neurofibromatosis.
URL:https://www.nfmidwest.org/event/nf-midwest-parent-chat/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/04/Parent-Chat-for-Event-Feature-Image.png
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240501T180000
DTEND;TZID=America/Chicago:20240501T200000
DTSTAMP:20260408T102812
CREATED:20240424T135118Z
LAST-MODIFIED:20240424T135854Z
UID:10000123-1714586400-1714593600@www.nfmidwest.org
SUMMARY:NF Awareness Event
DESCRIPTION:Join NF Midwest and Children’s Tumor Foundation for appetizers and wonderful conversation to celebrate the kickoff to NF Awareness month. Click here to register.
URL:https://www.nfmidwest.org/event/nf-awareness-event/
LOCATION:Harp and Fiddle\, 110 Main Street\, Park Ridge\, Illinois\, 60068
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2024/04/May-Awareness-Month-Gathering-Invitation-2024-Chicago-1-e1713967017863.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240502T180000
DTEND;TZID=America/Chicago:20240502T190000
DTSTAMP:20260408T102812
CREATED:20240425T141249Z
LAST-MODIFIED:20240425T141252Z
UID:10000124-1714672800-1714676400@www.nfmidwest.org
SUMMARY:NF1 PN Educational Event/Living With NF1 PN: How to Be Your Child's Advocate.
DESCRIPTION:Gain a new perspective on caring for a child with NF1 PN from this presentation. Learn more about NF1 PN\, the importance of PN monitoring and how to build your NF1 PN team. \n\n\n\n\n\n\n\n \n\n\n\n\nFor more information
URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-living-with-nf1-pn-how-to-be-your-childs-advocate/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2023/10/NF1_Webinar_DigitalFlyer_11.16.pdf-icon2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240509T180000
DTEND;TZID=America/Chicago:20240509T190000
DTSTAMP:20260408T102812
CREATED:20240425T141507Z
LAST-MODIFIED:20240425T141510Z
UID:10000125-1715277600-1715281200@www.nfmidwest.org
SUMMARY:NF1 PN Educational Event/All about NF1\, PN\, and a treatment option.
DESCRIPTION:Learn about Koselugo and the results seen in children with NF1 PN. Gain access to support programs to help you and your family in your journey. \n\n\n\n\n\n\n\n \n\n\n\n\nFor more information
URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-all-about-nf1-pn-and-a-treatment-option/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2023/10/NF1_Webinar_DigitalFlyer_11.16.pdf-icon2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240511T090000
DTEND;TZID=America/Chicago:20240511T130000
DTSTAMP:20260408T102812
CREATED:20231218T175206Z
LAST-MODIFIED:20240109T165025Z
UID:10000110-1715418000-1715432400@www.nfmidwest.org
SUMMARY:2024 Walk4NF Madison\, WI
DESCRIPTION:Walk4NF Madison Details\nGet ready for the annual Madison Walk4NF!  \nPlus\, NF Midwest is celebrating over 42 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!!
URL:https://www.nfmidwest.org/event/2024-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/2023/12/Headline-Image-with-NF-Logo-and-Walk4NF-Madison-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240518T090000
DTEND;TZID=America/Chicago:20240518T130000
DTSTAMP:20260408T102812
CREATED:20231218T175840Z
LAST-MODIFIED:20240109T165003Z
UID:10000111-1716022800-1716037200@www.nfmidwest.org
SUMMARY:2024 Walk4NF Indianapolis\, IN
DESCRIPTION:Walk4NF Indianapolis Details\nGet ready for the annual Indianapolis Walk4NF!  \nPlus\, NF Midwest is celebrating over 42 years as a chartered non-profit! \n(1) Register and learn much more at Walk4NF Indianapolis 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 located on the event page 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!!
URL:https://www.nfmidwest.org/event/2024-walk4nf-indianapolis-in/
LOCATION:White River State Park\, 801 W Washington Street\, Indianapolis\, IN\, 46204\, 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-Indy.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240518T090000
DTEND;TZID=America/Chicago:20240518T130000
DTSTAMP:20260408T102812
CREATED:20250102T163452Z
LAST-MODIFIED:20250102T163456Z
UID:10000589-1716022800-1716037200@www.nfmidwest.org
SUMMARY:2025 Walk4NF Indianapolis\, IN
DESCRIPTION:Walk4NF Indianapolis Details\nGet ready for the annual Indianapolis 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 Indianapolis 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-indianapolis-in/
LOCATION:White River State Park\, 801 W Washington Street\, Indianapolis\, IN\, 46204\, 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-Indy-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240521T190000
DTEND;TZID=America/Chicago:20240521T200000
DTSTAMP:20260408T102812
CREATED:20240425T141713Z
LAST-MODIFIED:20240425T141749Z
UID:10000126-1716318000-1716321600@www.nfmidwest.org
SUMMARY:NF1 PN Educational Event/An introduction to managing NF1 PN Educational Event/
DESCRIPTION:Get the basics of treating NF1 PN from an Alexion Patient Education Manager. Hear about support options available to you and your family. \n\n\n\n\n\n\n\n \n\n\n\n\nFor more information
URL:https://www.nfmidwest.org/event/nf1-pn-educational-event-an-introduction-to-managing-nf1-pnnf1-pn-educational-event/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2023/10/NF1_Webinar_DigitalFlyer_11.16.pdf-icon2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240523T183000
DTEND;TZID=America/Chicago:20240523T193000
DTSTAMP:20260408T102812
CREATED:20240513T163756Z
LAST-MODIFIED:20240927T185756Z
UID:10000128-1716489000-1716492600@www.nfmidwest.org
SUMMARY:Monthly NF Midwest Parent Group Chat
DESCRIPTION:Designed for parents with a child of any age with NF\, this virtual chat provides a dedicated space for sharing insights and connecting with others who comprehend the unique joys and concerns of having a child with neurofibromatosis. \n\n\n\nPlease Note: Due to registration numbers and staff availability\, meeting times and dates may occasionally be subject to change. We will do our best to provide advanced notice of any adjustments.
URL:https://www.nfmidwest.org/event/nf-midwest-parent-group-chat/2024-05-23/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2023/04/Parent-Chat-for-Event-Feature-Image.png
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240608T083000
DTEND;TZID=America/Chicago:20240608T130000
DTSTAMP:20260408T102812
CREATED:20231218T180125Z
LAST-MODIFIED:20240222T035926Z
UID:10000112-1717835400-1717851600@www.nfmidwest.org
SUMMARY:2024 Walk4NF Naperville\, IL
DESCRIPTION:Walk4NF Naperville Details\nGet ready for the 23rd Naperville Walk4NF-the largest walk and party in the park for NF in the country! \nPlus\, NF Midwest is celebrating over 42 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!!
URL:https://www.nfmidwest.org/event/2024-walk4nf-naperville-il/
LOCATION:Naperville Riverwalk\, 912 Honorary Sindt Memorial Ct\, Naperville\, IL\, 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:20240721T080000
DTEND;TZID=America/Chicago:20240727T170000
DTSTAMP:20260408T102812
CREATED:20240322T133104Z
LAST-MODIFIED:20240322T133107Z
UID:10000118-1721548800-1722099600@www.nfmidwest.org
SUMMARY:Brainy Ridge Camp NF
DESCRIPTION:A 7 day\, 6 night residential summer camp for children and teens living with Neurofibromatosis Type 1\, Type 2 and Schwannomatosis. Medical 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.  \n\n\n\n*Scholarships availableFor more information\, please contact Sarah at outreach@nfmidwest.org
URL:https://www.nfmidwest.org/event/brainy-ridge-camp-nf/
LOCATION:Blue Ridge School\, St. George\, Virginia\, United States
CATEGORIES:Camp
ATTACH;FMTTYPE=image/webp:https://www.nfmidwest.org/wp-content/uploads/2024/03/Camp-logo.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240801T180000
DTEND;TZID=America/Chicago:20240801T180000
DTSTAMP:20260408T102812
CREATED:20240711T142333Z
LAST-MODIFIED:20240711T142336Z
UID:10000514-1722535200-1722535200@www.nfmidwest.org
SUMMARY:NF1 PN Educational Virtual Event-Care Givers Need Care\, Too
DESCRIPTION:Care givers need care\, too. At this event attendees will gain a new perspective on caring for a child with NF1 PN and learn how to build your NF1 ON team. Presentation by Regina Zambrano\, MD.
URL:https://www.nfmidwest.org/event/nf1-pn-educational-virtual-event-care-givers-need-care-too/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2023/10/NF1_Webinar_DigitalFlyer_11.16.pdf-icon2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Kentucky/Louisville:20240803T090000
DTEND;TZID=America/Kentucky/Louisville:20240803T140000
DTSTAMP:20260408T102812
CREATED:20240702T141929Z
LAST-MODIFIED:20240709T033901Z
UID:10000513-1722675600-1722693600@www.nfmidwest.org
SUMMARY:NF Patient Education Symposium at the University of Kentucky
DESCRIPTION:Join us for an informative symposium specifically designed for neurofibromatosis patients and their families. A breakfast buffet will be provided.  \n\n\n\nSpeakers:Dr. Donita Lightner – Neurology- Oncology\, University of KentuckyDr. Micheal Hendricks – Neurology\, University of Kentucky \n\n\n\nPlease RSVP to Kim Osborne at kimosborne@uky.edu or (859) 218-5011
URL:https://www.nfmidwest.org/event/neurofibromatosis-patient-education-symposium-with-university-of-kentucky-and-nf-midwest/
LOCATION:Clarion Hotel Conference Center\, 1950 Newtown Pike\, Lexington\, Kentucky\, 40511\, United States
CATEGORIES:Educational Events
ATTACH;FMTTYPE=application/pdf:https://www.nfmidwest.org/wp-content/uploads/2024/07/NF-Symposium-Invitation-080324.pdf
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240915T000000
DTEND;TZID=America/Chicago:20240915T235959
DTSTAMP:20260408T102812
CREATED:20240701T184737Z
LAST-MODIFIED:20240711T210726Z
UID:10000512-1726358400-1726444799@www.nfmidwest.org
SUMMARY:2024 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 2nd). 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. At checkout use use the discountcode CTFNSC to receive a 10%discount\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/north-shore-century-ride-2/
CATEGORIES:Fundraisers
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/07/2024-North-Shore-Featured-Image-for-Website-Calendar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241001T080000
DTEND;TZID=America/Chicago:20241231T180000
DTSTAMP:20260408T102812
CREATED:20240924T162118Z
LAST-MODIFIED:20241111T213402Z
UID:10000519-1727769600-1735668000@www.nfmidwest.org
SUMMARY:Champions of the Fall
DESCRIPTION:START YOUR CREW OR JOIN ONE TODAY!\n\n\n\n\n\n\n\n\nThree Months. One Champion. Rally Your Crew!  \n\n\n\nNF Midwest has a new fall fundraising and awareness campaign kicking off on October 1st called Champions of the Fall (COTF).  The goal is to raise funds and awareness from October 1st through December 31st. Anyone can participate. Individuals or teams create their events and/or participate in opportunities provided by NF Midwest.  \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 December 31st\, so plenty of time to make a BIG impact. \n\n\n\nJoin the Fun & Fundraise: Throughout the campaign\, NF Midwest will host exciting events like an October raffle\, Five Bucks Fridays in November\, Giving Tuesday\, and a Holiday Surprise! 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 organize an Ugly Holiday Sweater contest. You can 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 2025\, your COTF can be transferred directly 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\n\nSTART YOUR CREW OR JOIN ONE TODAY!
URL:https://www.nfmidwest.org/event/champions-of-the-fall/
CATEGORIES:Fundraisers,Champions of the Fall
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/09/Champions-of-the-Fall-1200-x-450-1200-x-630-px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241016T190000
DTEND;TZID=America/Chicago:20241016T210000
DTSTAMP:20260408T102812
CREATED:20240827T192931Z
LAST-MODIFIED:20240918T134413Z
UID:10000515-1729105200-1729112400@www.nfmidwest.org
SUMMARY:Caregivers Need Care\, Too
DESCRIPTION:Free Educational Event \n\n\n\nAt Maggiano’s Little Italy240 Oakbrook CenterOak Brook\, Illinois 60523 \n\n\n\nManaging NF1 PN can be complex! \n\n\n\nAt Alexion\, we know that support matters. Hear from a healthcareprofessional and Patient Education Manager to learn more aboutneurofibromatosis type 1 with plexiform neurofibromas (NF1 PN). \n\n\n\nAt this event you will: \n\n\n\n\nBe provided a realistic and humanized approach to an often-sensitive topic.\n\n\n\nCaregivers 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\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\nPlease RSVP for this event at koselogo.com/events. \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nPDF FLYER\n\n\n\nRSVP
URL:https://www.nfmidwest.org/event/caregivers-need-care-too/
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:20241026T080000
DTEND;TZID=America/Chicago:20241026T160000
DTSTAMP:20260408T102812
CREATED:20240402T193828Z
LAST-MODIFIED:20241025T180146Z
UID:10000120-1729929600-1729958400@www.nfmidwest.org
SUMMARY:2024 iNFo Fair
DESCRIPTION:REGISTRATION AND DONATION PAGE\n\n\n\n\n\n\n\n\n\n\nThis Year’s Focus Will Be On Research! \n\n\n\nJoin us for an all-day iNFo Fair in Naperville\, Illinois\, on Saturday\, October 26th. Don’t miss this unique opportunity to learn about past\, present\, and future research projects. It’s also a great chance to connect with others\, which is essential for building support. \n\n\n\nCo-Chaired by Miriam Bornhorst\, MD of Lurie Children’s Hospital and Vanessa Merker\, PhD of Massachusetts General Hospital. \n\n\n\n\n\nLOCATION: \n\n\n\n\n\nNorthern Illinois University – Naperville Campus1120 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 4:30 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/AGENDA\n\n\n\n\n\n\n\n\nGENERAL TOPICS\nPathway to Treatment Approval – Presented by Andrea Gross\, MDLearn about the complex process of getting a treatment approved. Discover how many researchers\, clinicians\, and patients are involved\, as well as the funding challenges and hurdles of FDA approval. This presentation will help you understand why research and new treatments take so long\, begin to see the hope of NF research\, and recognize what we can do to help the process. \n\n\n\n\nTYPES OF RESEARCHThroughout two presentations\, we will explore different types of research\, their roles in advancing Neurofibromatosis (NF) care\, and how they contribute to improving patient outcomes. Learn about the significance of each type of research and discover ways to participate in and support these vital efforts. These sessions are ideal for anyone interested in understanding the impact of research on NF care. \n\n\n\nInterventional Research – Presented by Miriam Bornhorst\, MD \n\n\n\nNon-Interventional Research – Presented by Vanessa Merker\, PhD \n\n\n\n\nHow Research is Funded – Presented by Sarah Lees\, CTF \n\n\n\nPanel DiscussionHear from patients and parents who have participated in research in different ways. Share obstacles and concerns. \n\n\n\nUnderstanding Gene Therapy – Presented by Miranda McManus \n\n\n\n \n\n\n\n\nNF1 BREAKOUT AND RESEARCH UPDATES\nTopics Subject to Change \n\n\n\nNF1 Clinical Trials – Dr. Bornhorst \n\n\n\nThe Use of Biomarkers in NF1 – Dr. Garzon \n\n\n\nNF Genetics Cohort:  the Clinical\, Genomic and Photographic Registry for Neurofibromas in NF1 – Dr. SarinMore updates being added soon \n\n\n\n\nNF2-SWN AND SWN BREAKOUT AND RESEARCH UPDATES\nTopics Subject to Change \n\n\n\nNF2-Related Schwannomatosis and Schwannomatosis Trials – Past\, Present\, and Future Research in NF \n\n\n\nINTUITT-NF2 Study – Innovative trial for understanding the impact of targeted treatments in NF2-Related Schwannomatosis \n\n\n\nSTARFISH Study – Screening trial for pain relief in schwannomatosis \n\n\n\nDrug Repurposing in NF2-SWN – Use of medications used in other medical conditions to treat NF2-related complications \n\n\n\n\n\n\n\n\n\nPRESENTER BIOS\n\n\n\nMIRIAM BORNHORST\, MD – iNFo Fair Co-Chair\n\n\n\n\nDr. Bornhorst is a pediatric neuro-oncologist at Lurie Children’s Hospital (LCH)\, principal investigator in the Stanley Manne Children’s Research Institute\, Max Lacewell Endowed Brain Tumor Research Scholar\, and an Associate Professor in Pediatrics at Northwestern University\, Chicago\, IL. Her research interest and experience are in the discovery of tumor biomarkers that predict tumor behavior\, including response to treatment. She has an active\, funded research project looking at baseline metabolism in NF1\, and how to leverage changes in metabolism to prevent/treat plexiform neurofibromas. She also has an active project researching SV patterns within tumors associated with risk for progression/decreased treatment response. In her role as a neuro-oncologist\, she has extensive experience with the clinical care of children with brain tumors\, Neurofibromatosis Type 1\, and Cancer Predisposition\, including clinical trial development and execution.   \n\n\n\n\nVANESSA MERKER\, PhD – iNFo Fair Co-Chair\n \n\n\n\n\n\n\n\nVanessa L. Merker\, PhD\, is a health services researcher at Massachusetts General Hospital and an Assistant Professor in Neurology at Harvard Medical School. Her research program leverages information collected directly from patients and their family members to improve clinical trial design and healthcare delivery for rare\, genetic diseases like neurofibromatosis and schwannomatosis. She seeks to highlight patients’ priorities and tailor clinical interventions to match their preferences by using research methods such as in-depth qualitative interviews and patient-reported outcome measures. \n\n\n\nDr. Merker is also committed to partnering with NF families to help design and disseminate research. As Chair of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REINS) International Collaboration Patient Representative working group\, she helps enable NF patients/caregivers to give feedback on the design of new research studies. \n\n\n\n\nANDREA GROSS\, MD\n\n\n\n\nDr. Gross is a pediatric oncologist and researcher at the National Institutes of Health National Cancer Institute (NIH/NCI). She is a prominent researcher and clinician with a focus on neurofibromatosis type 1 (NF1). Her areas of interest include developing and utilizing functional outcome measures for tumor predisposition syndromes\, working with rare disease patient advocates to increase patient engagement in clinical trial design\, and dealing with the challenge of medication adherence in the NF1 population. \n\n\n\n\nMATTHIAS KARAJANNIS\, MD\, MS\n\n\n\n\nDr. Karajannis has been serving as Chief of the Pediatric Neuro-Oncology Service at Memorial Sloan Kettering Cancer Center since 2017 and is a Professor of Pediatrics at Weill-Cornell Medical College. Previously\, he directed the Pediatric Hematology/Oncology Fellowship Training Program at NYU Langone Medical Center. He received his MD from the Free University Berlin\, Germany\, completed residency training at Duke University Medical Center\, and fellowships in pediatric hematology/oncology\, as well as pediatric neuro-oncology\, at Memorial Sloan-Kettering Cancer Center. His clinical and translational research aims at developing novel diagnostic tools and therapies for patients with nervous system tumors. Dr. Karajannis currently serves as Study Chair on clinical trials conducted by the Pedatric Brain Tumor Consortium\, the NF Clinical Trials Consortium and the Children’s Oncology Group. \n\n\n\n\nSARAH LEES\, MS\, MEd\, MHA\n\n\n\n\nSarah Lees\, MS\, MEd\, MHA serves as the Director of Research Education and Engagement\, including co-planning the Global NF Conference\, for Children’s Tumor Foundation. Prior to her time with CTF\, Sarah has over a decade of experience in healthcare innovation\, process improvement\, brand building\, and education. She also worked as a Senior Scientist in a Biomedical Engineering lab at Georgia Tech\, with a focus on wound healing\, inflammation\, and scar formation\, and as a secondary science educator. She holds advanced degrees in molecular genetics\, education\, and healthcare administration. \n\n\n\n\nMIRANDA MCMANUS\, MS\n\n\n\n\nMiranda McManus\, MS\, a parent to a son with NF1\, her inspiration and hero. Miranda is also part of the Biology faculty at the College of Charleston\, in Charleston\, SC\, and has a background in molecular genetics. She is a member of the REiNS Gene Therapy working group and serves on the REiNS Director’s Council. \n\n\n\n\nJENNY GARZON\, MD (replacing Dr. Carlos Prada)\n\n\n\n\nDr. Garzon is a Postdoctoral Fellow working with Dr. Carlos Prada at Lurie Children’s Hospital. Her current research focuses on identifying novel blood biomarkers in Neurofibromatosis Type 1 patients and plexiform neurofibromas. \n\n\n\n\nKAVITA SARIN\, MD PhD \n\n\n\n\nKavita Sarin\, M.D./Ph.D.\, is an Associate Professor of Dermatology and is the Director of the Stanford Skin Cancer Genetics Program at the Stanford Cancer Institute. She has an academic interest in Precision Medicine\, focused on the integration of genetic and clinical patient data to inform susceptibility\, prognosis\, and treatments in skin cancer and other rare dermatologic disorders. Her lab applies cutting-edge sequencing and imaging technologies to better understand skin cancer and rare immunologic skin diseases. She sees patients in medical dermatology at Portola Valley and the Stanford Cancer Institute. \n\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\nHOTEL INFO\n\n\n\nA small block of rooms has been reserved at the Naperville Holiday Inn Express for $119 per night. Rooms must be reserved before the number of blocked rooms runs out and by October 9th 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/2024hotel to make your reservation. \n\n\n\nHoliday Inn Express1837 Centre Point CircleNaperville\, IL 60563
URL:https://www.nfmidwest.org/event/2024-info-fair/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/04/Untitled-1200-x-630-px-1.png
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241105T080000
DTEND;TZID=America/Chicago:20241127T180000
DTSTAMP:20260408T102812
CREATED:20241106T221247Z
LAST-MODIFIED:20241106T232836Z
UID:10000585-1730793600-1732730400@www.nfmidwest.org
SUMMARY:Windfall Wednesday
DESCRIPTION:You’ll be spending money on Black Friday\, Cyber Monday\, Giving Tuesday\, and throughout the season of gift-giving. Now is your chance to get money to help you through the holidays while also supporting a great cause and your favorite NF family or team in their Champion of the Fall efforts. \n\n\n\nMake a donation and earn entries to win up to $500 in Visa gift cards. TWO $250 cards will be awarded on Windfall Wednesday\, November 27th at 6 pm CST (Winners will be notified immediately by email. \n\n\n\nWhen you make your donation\, choose any team listed. Each of these teams is participating in Champions of the Fall. As part of their efforts\, they will be using Windfall Wednesday\, Giving Tuesday\, end-of-year giving\, and any special events or creative ideas they come up with to raise funds and ensure that those with NF Never Fight Alone. \n\n\n\n\n\nMore Info$50 raisedDonate
URL:https://www.nfmidwest.org/event/windfall-wednesday/
CATEGORIES:Fundraisers,Champions of the Fall
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250128T180000
DTEND;TZID=America/Chicago:20250128T190000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events,Camp
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250128T200000
DTEND;TZID=America/Chicago:20250128T210000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/08/Alexion-Event-e1737556670206.png
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DTSTART;TZID=America/Chicago:20250211T200000
DTEND;TZID=America/Chicago:20250211T210000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2024/08/Alexion-Event-e1737556670206.png
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DTSTART;TZID=America/Chicago:20250225T180000
DTEND;TZID=America/Chicago:20250225T190000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250327T200000
DTEND;TZID=America/Chicago:20250327T210000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events
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DTSTART;TZID=America/Chicago:20250426T170000
DTEND;TZID=America/Chicago:20250426T230000
DTSTAMP:20260408T102812
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
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250429T173000
DTEND;TZID=America/Chicago:20250429T173000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250510T090000
DTEND;TZID=America/Chicago:20250510T130000
DTSTAMP:20260408T102812
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
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250527T173000
DTEND;TZID=America/Chicago:20250527T173000
DTSTAMP:20260408T102812
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/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2025/05/Meet-MEK-user.png
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250531T090000
DTEND;TZID=America/Chicago:20250531T130000
DTSTAMP:20260408T102812
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
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250607T083000
DTEND;TZID=America/Chicago:20250607T130000
DTSTAMP:20260408T102812
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
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DTSTART;TZID=America/Chicago:20250620T180000
DTEND;TZID=America/Chicago:20250620T200000
DTSTAMP:20260408T102812
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
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