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X-WR-CALNAME:Neurofibromatosis Midwest
X-ORIGINAL-URL:https://www.nfmidwest.org
X-WR-CALDESC:Events for Neurofibromatosis Midwest
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DTSTART;TZID=America/Chicago:20210513T200000
DTEND;TZID=America/Chicago:20210513T210000
DTSTAMP:20260405T225524
CREATED:20210331T044424Z
LAST-MODIFIED:20210406T162249Z
UID:10000074-1620936000-1620939600@www.nfmidwest.org
SUMMARY:Parent Group Meeting with Genetics Discussion
DESCRIPTION:If you’re a parent of a child with neurofibromatosis type 1\, type 2\, or schwannomatosis you’re welcome to join our parent group which meets online on the 2nd Thursday of every month at 8 PM CST. Even if your child is grown\, you’re welcome to join us and share your wisdom. We will often have special guests and special topics and we hope to always have time to express concerns and/or share stories. \nMay 13th’s meeting will include a short visit by Allison (Goetsch) Weisman\, MS\, CGC a Genetic Counselor from Lurie Children’s Hospital of Chicago. Allison will take questions about genetics and NF.  \nNote\, NF Midwest serves Illinois\, Indiana\, Iowa\, Kentucky\, Missouri\, and Wisconsin. We invite people from other areas to attend\, however\, if the group gets large we may have to restrict participation to our area. Also\, some topics or areas of support may not apply if you’re not from our area.
URL:https://www.nfmidwest.org/event/parent-group-meeting-2/
LOCATION:Online
CATEGORIES:Educational Events,NF Get Togethers
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2021/03/Power-Hour-Parent-Group.png
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210505T183000
DTEND;TZID=America/Chicago:20210505T193000
DTSTAMP:20260405T225524
CREATED:20210331T042908Z
LAST-MODIFIED:20210331T043706Z
UID:10000073-1620239400-1620243000@www.nfmidwest.org
SUMMARY:NF Power Hour-Meet the Docs from Indiana University
DESCRIPTION:Join NF Midwest for a Q&A and casual conversation with NF physicians from Indiana University and Riley Hospital for Children. These are physicians who are part of the pediatric NF clinic and include a neurologist who is seeing adults with NF. Scheduled to attend are… \nMichael Ferguson\, MD\, MS \nAssistant Professor\, Department of Pediatrics\nIndiana University School of Medicine and Riley Hospital for Children \nSteven Rhodes\, M.D.\, Ph.D.\nFellow\, Pediatric Hematology-Oncology\nFrancis S. Collins Scholar in Neurofibromatosis Clinical\nand Translational Research\nIndiana University School of Medicine and Riley Hospital for Children \nKathryn Nevel\, MD\nAssistant Professor of Neurology –  Indiana University Health \n 
URL:https://www.nfmidwest.org/event/nf-power-hour-what-and-when-to-talk-to-your-kids-about-nf-2/
LOCATION:Online
CATEGORIES:Educational Events,NF Get Togethers
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2021/03/Indiana-Meet-the-Docs.png
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210501T100000
DTEND;TZID=America/Chicago:20210501T130000
DTSTAMP:20260405T225524
CREATED:20210312T212134Z
LAST-MODIFIED:20210318T173529Z
UID:10000071-1619863200-1619874000@www.nfmidwest.org
SUMMARY:Walk4NF YOUR WAY Columbia\, MO
DESCRIPTION:Walk Your Way Columbia Details\n1. Choose your place and people to walk with\nOur Columbia walk is on this year! We’ll be walking at Stephens Lake Park. If you’re uncomfortable and want to socially distance we invite you to join us virtually that day or at one of our virtual events which include Madison\, WI on May 15th and Naperville\, IL June 1st. \n2. Register; Order T-shirts; Fundraise\nRegister as soon as possible as we plan to have challenges\, games\, and updates until the event. Participation is free however if you or your teammates want t-shirts\, you must raise $100 or pay $25 for a t-shirt ($15 for kids). \nWhen signing up\, 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. \nYou’ll find everything you need including donation forms\, fundraising ideas\, and more on the registration site. \n3. May 1st walk \nJoin us in Stephens Lake Park the morning of the walk. Check-in will start at 10:00. \n 
URL:https://www.nfmidwest.org/event/great-steps-walk-4-nf-columbia/
CATEGORIES:Walks 4NF
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210408T200000
DTEND;TZID=America/Chicago:20210408T210000
DTSTAMP:20260405T225524
CREATED:20210318T041649Z
LAST-MODIFIED:20231201T175226Z
UID:10000072-1617912000-1617915600@www.nfmidwest.org
SUMMARY:Parent Group Meeting with Speech Discussion
DESCRIPTION:If you’re a parent of a child with neurofibromatosis type 1\, type 2\, or schwannomatosis you’re welcome to join our parent group which meets online on the 2nd Thursday of every month at 8 PM CST. Even if your child is grown\, you’re welcome to join us and share your wisdom. We will often have special guests and special topics.\n\nWe will have a discussion about speech at the beginning of the April 8th meeting. Heather Thompson\, PhD CCC-SLP speech pathologist and NF researcher from California State University will be joining us.\n\nNote\, NF Midwest serves Illinois\, Indiana\, Iowa\, Kentucky\, Missouri\, and Wisconsin. We invite people from other areas to attend\, however\, if the group gets large we may have to restrict participation to our area. Also\, some topics or areas of support may not apply if you’re not from our area.
URL:https://www.nfmidwest.org/event/parent-group-meeting/
LOCATION:Online
CATEGORIES:Educational Events,NF Get Togethers
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2021/03/Power-Hour-Parent-Group.png
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210216T193000
DTEND;TZID=America/Chicago:20210216T210000
DTSTAMP:20260405T225524
CREATED:20210128T201917Z
LAST-MODIFIED:20231201T175301Z
UID:10000068-1613503800-1613509200@www.nfmidwest.org
SUMMARY:NF Power Hour-What and When to Talk To Your Kids about NF
DESCRIPTION:Edna Romero\, PhD.\, Assistant Professor of Psychiatry and Behavioral Sciences (Child and Adolescent Psychiatry) at Lurie Children’s Hospital of Chicago will be our guest for this NF Power Hour. She will guide parents on how and when is the best time to discuss it with your child or their siblings.
URL:https://www.nfmidwest.org/event/nf-power-hour-what-and-when-to-talk-to-your-kids-about-nf/
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210203T190000
DTEND;TZID=America/Chicago:20210203T203000
DTSTAMP:20260405T225524
CREATED:20210118T220439Z
LAST-MODIFIED:20210118T220439Z
UID:10000067-1612378800-1612384200@www.nfmidwest.org
SUMMARY:INFormation Session/NF Power Hour
DESCRIPTION:NF Midwest\, NF Northeast\, and NF Texas have teamed up to bring the NF community two important virtual iNFformation sessions or NF Power Hours. \nThis one will cover Medicare\, Medicaid\, Insurance\, and other assistance. \nPlease register for the virtual event at www.bitly.com/nfinsurance
URL:https://www.nfmidwest.org/event/information-session-nf-power-hour/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210126T190000
DTEND;TZID=America/Chicago:20210126T203000
DTSTAMP:20260405T225524
CREATED:20210118T220227Z
LAST-MODIFIED:20210118T220227Z
UID:10000066-1611687600-1611693000@www.nfmidwest.org
SUMMARY:iNFormation Session or NF Power Hour
DESCRIPTION:NF Midwest\, NF Northeast\, and NF Texas have teamed up to bring the NF community two improtant virtual iNFormation sessions or NF Power Hours. \nThe first one will cover SSI\, SSDI (disability)\, ABLE accounts and special needs trusts and wills. \n  \nPlease register for the zoom at www.bitly.com/nf-ssdi
URL:https://www.nfmidwest.org/event/information-session-or-nf-power-hour/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20201017T100000
DTEND;TZID=America/Chicago:20201017T120000
DTSTAMP:20260405T225524
CREATED:20200616T182750Z
LAST-MODIFIED:20201011T202812Z
UID:10000064-1602928800-1602936000@www.nfmidwest.org
SUMMARY:The Walk That Wasn't
DESCRIPTION:Due to COVID our physical walks are cancelled but we’re still following our walk motto that “No One Fights Alone When We All Party Together!” and we need the NF Midwest community to come together more now than ever before! \nJoin us in this special journey by signing up now at www.nfmidwest.org/walkthatwasnt. \nRegister Now          Sponsorship opportunities \nHow To Participate in TWTW\nPhase One—Individuals Raise FUNds and Awareness! \n\nSign up NOW as an individual or as a TEAM of individuals and start raising funds and awareness through whatever fun ways you can think of or by simply sharing your personal fundraising page.\nCompete for prizes and earn recognition gifts.\nHave fun\, be crazy\, get people to join in and raise awareness.\nBe sure to invite individuals to fundraise under your team so that you have the honor of raising the most and choosing next year’s t-shirt colors.\nRegistered fundraisers will get a Walk that Wasn’t t-shirt if they raise $100 or pay the $25 fee. (Note: Registration fees will NOT be added to fundraising totals.) T-shirts will be given to team Captains (when applicable).\nCreate a recording (this is optional) of your team\, about NF\, about a loved one with NF \, maybe an interesting talent\, or anything you can think of and send it to NF Midwest.\n\nPhase Two—Come to the TWTW CELEBRATHON! \n\nJoin us (and invite everyone you know) to our October 17th Walk that Wasn’t Celebrathon. This will replace our actual walks.\nWe’ll celebrate our community and our fundraisers.\nThere will be raffles and more.\nShow the best submitted videos (don’t worry if your video isn’t show we will share it in other ways.)\n\n 
URL:https://www.nfmidwest.org/event/the-walk-that-wasnt-great-steps-walk4nf-2020/
CATEGORIES:Walks 4NF
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200720
DTEND;VALUE=DATE:20200725
DTSTAMP:20260405T225524
CREATED:20200123T040609Z
LAST-MODIFIED:20200521T175500Z
UID:10000063-1595203200-1595635199@www.nfmidwest.org
SUMMARY:Camp New Friends 2020 Virtual Camp
DESCRIPTION:Do you have a child interested in attending Camp New Friends\, a camp for kids with neurofibromatosis? If so\, NF Midwest provides camperships and travel assistance for children from our region.  For the past 15 years kids from our area have benefited greatly from this camp experience.  Applications for camp and for assistance are taken by Camp New Friends Brainy Camps and reimbursed by NF Midwest.  \nThis year camp will be virtual and is an excellent opportunity for your child with NF to meet others. The cost is only $200 and NF Midwest will pay $100 of that for anyone from our states (Illinois\, Indiana\, Iowa\, Kentucky\, Missouri\, and Wisconsin) We will also be sending a $25 Amazon gift card to any of our campers who participate in approximately 75% of the activities. \n Please contact us if you’d like more information or go to brainycamps.com. \nREAD MORE
URL:https://www.nfmidwest.org/event/camp-new-friends-2020/
LOCATION:Blue Ridge School\, 273 Mayo Drive\, St. George\, VA\, 22935\, United States
CATEGORIES:NF Get Togethers
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2016/04/go-cart-web.jpg
ORGANIZER;CN="Brainy Camps/Children's National Medical Center":MAILTO:info@brainycamps.com
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