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X-WR-CALDESC:Events for Neurofibromatosis Midwest
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20230117T180000
DTEND;TZID=America/Chicago:20230117T190000
DTSTAMP:20260405T194946
CREATED:20221216T183833Z
LAST-MODIFIED:20221216T192654Z
UID:10000092-1673978400-1673982000@www.nfmidwest.org
SUMMARY:Information Session about Classrooms That Care
DESCRIPTION:Classrooms that Care is a service-learning program that teaches students and/or educational staff about neurofibromatosis (NF) and allied disorders through educational activities and programming designed to fit into school curriculum standards. \nIf you have a student with NF\, you’re invited to attend the first ever information session about Classrooms that Care the evening of Tuesday\, January 17th. Learn more about the resources provided\, discuss how to share them with your student’s support team\, and ask questions during the Q&A session! \nPlease register here. 
URL:https://www.nfmidwest.org/event/information-session-about-classrooms-that-care/
CATEGORIES:Educational Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20230102T080000
DTEND;TZID=America/Chicago:20230106T170000
DTSTAMP:20260405T194946
CREATED:20220915T185512Z
LAST-MODIFIED:20220915T185619Z
UID:10000089-1672646400-1673024400@www.nfmidwest.org
SUMMARY:NF Young Adult Leadership Program
DESCRIPTION:Are you a young adult living with NF and want to make a difference in your community?\n\n\n\nIn addition to NF’s clinical impacts\, young people with NF or schwannomatosis are faced with the common and often elevated challenges of young adulthood. Yet\, resources for this group are virtually nonexistent. \nWe created the NF Young Adult Leadership Program in collaboration wit The Littlest Tumor Foundation and Texas NF to help NF youth develop critical leadership skills\, advocate for NF solutions\, educate Congress\, and advance NF research. \nThis five-day program includes workshops with leadership experts and mentors\, meetings with Congressional leaders in DC\,  and two briefings – one in the House and one in the Senate. Young leaders will break-up to visit to all 435 Congressional offices and 100 Senate offices. \n\n\n\nThe NF Young Adult Leadership Program is an opportunity for NF-affected young adults to learn effective advocacy skills and speak directly to policymakers about NF. The 5-day program is the first of its kind\, allowing young adults to make a difference in the NF community. \nProgram priorities are to create leaders\, advance research\, and bring new voices to the forefront of advocacy. \n\nBecome a leader today.\n\nThe 2023 program will be held January 2-6th\, 2023 in Washington D.C. Scholarships are available to qualified applicants. \n\n\nAPPLY HERE
URL:https://www.nfmidwest.org/event/nf-young-adult-leadership-program/
CATEGORIES:Educational Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20221208T200000
DTEND;TZID=America/Chicago:20221208T210000
DTSTAMP:20260405T194946
CREATED:20221116T202833Z
LAST-MODIFIED:20221116T204452Z
UID:10000090-1670529600-1670533200@www.nfmidwest.org
SUMMARY:Discussion About Social Skills & Executive Functioning (Monthly Parent's Group)
DESCRIPTION:Register or Join \nDo you have kids with NF1\, NF2-SWN\, or Schwannomatosis? Whether they’re grown or still young\, join us online on the 2nd Thursday of every month in the evening. \nOn December 8th\, Bonnie Klein-Tasman PhD will be joining us to discuss social skills and executive functioning. Dr. Klein-Tasman is a psychologist at the University of Wisconsin – Milwaukee and director of the Child Neurodevelopment Research Lab and the UWM Child Assessment Clinic. Dr. Klein-Tasman is also an NF1 researcher. She has past and current projects on cognitive and social challenges in children with NF1. \nJoin us at www.nfmidwest.org/parentsgroup.
URL:https://www.nfmidwest.org/event/discussion-about-social-skills-executive-functioning-monthly-parents-group/
LOCATION:Online
CATEGORIES:Educational Events,NF Get Togethers
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220924T120000
DTEND;TZID=America/Chicago:20220924T220000
DTSTAMP:20260405T194946
CREATED:20220901T200914Z
LAST-MODIFIED:20231002T173933Z
UID:10000088-1664020800-1664056800@www.nfmidwest.org
SUMMARY:SamJam Music & Brewfest
DESCRIPTION:There’s something for everyone at SamJam!\n10 Hours of live music to benefit Neurofibromatosis (NF) featuring folk\, rock\, progressive bluegrass\, country\, and blues.\nThe 2022 SamJam Music and Brewfest will be held on Saturday\, Sept. 24 from noon until 10 p.m. at the Macoupin County Fairgrounds\, just north of Carlinville. The event will feature everything from R&B to country and rock and roll\, jazz\, and American folk.\n\nKnown for top-quality music\, SamJam was created in 2014 to honor Sam\, who has endured years of struggle with neurofibromatosis (NF)\, which affects 1 in every 2\,500 worldwide. NF is most often noticed in childhood or early adulthood\, and appears equally across sexes\, races\, and ethnic groups. \n\nIn its first seven editions\, SamJam has raised $71\,000\, with the funds going to NF Midwest an organization that provides research grants and support services in Illinois and five surrounding states.\n\nThis year’s version of SamJam features five bands of distinct musical talents\, including the closing act\, Al Holliday and The East Side Rhythm Band. Based on the Metro East\, the band mixes the best elements of rhythm and blues with old-school blues\, soul\, funk\, and jazz.\n\nThe band will release their fourth album later this year and has toured across the country\, as well as Europe.\n\nOther performers at SamJam include Positively 4th Street of Springfield\, which plays everything from ‘30s-style blues to rock\, country\, originals\, Bob Dylan\, and Tom Petty\, and Isaiah Christian and the Rebel Saints\, an up-and-coming country singer from Winchester\, Ill.\n\nThere’s also Pete Jive\, a Naperville performer that presents a mix of American folk\, rock\, and roots reggae\, and One Way Traffic\, a St. Louis-based progressive bluegrass group.\n\nLike last year\, SamJam will be held outside on the carnival midway of the fairgrounds\, with two pole tents and a professional stage. Food trucks\, a tub raffle\, and a wide selection of beer will also be offered. Camping is also available on the fairgrounds.\n\nTickets for SamJam are only available at the gate and are $20 for adults and $10 for students\, with free admission for 16 and under. Spectators are urged to bring lawn chairs\, blankets\, and umbrellas. For more information\, or to make donations\, visit www.SamJam4NF.com or call 217-556-4917.\n\nIf you have neurofibromatosis or schwannomatosis contact the event organizers or NF Midwest to receive complementary admission at the gate.\n\n \n\n 
URL:https://www.nfmidwest.org/event/samjam-music-brewfest/
LOCATION:Macoupin Fairgrounds\, 21368 Rte. 4\, Carlinville\, IL\, 62626\, United States
CATEGORIES:DIY Fundraisers
ATTACH;FMTTYPE=image/jpeg:https://www.nfmidwest.org/wp-content/uploads/2022/09/SamJam-Road-Banner-2022-NF.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220903T100000
DTEND;TZID=America/Chicago:20220903T130000
DTSTAMP:20260405T194946
CREATED:20220622T153818Z
LAST-MODIFIED:20220622T153859Z
UID:10000087-1662199200-1662210000@www.nfmidwest.org
SUMMARY:Walk4NF Indianapolis
DESCRIPTION:Walk4NF Indianapolis Details\nGet ready for the Indianapolis Walk4NF (also known as Great Steps4NF)! \nPlus\, NF Midwest is celebrating 40 years as a chartered non-profit! \n(1) Register below as soon as possible so we know how many t-shirts\, volunteers\, and food to have. 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(2) 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 on the event page will give you everything you need to get started! We’ll be here every step of the way! \n(3) 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!! \nKeep in mind t-shirts are ONLY guaranteed for participants who pre-register at least 3 weeks before the event. There are some fantastic recognition gifts you can earn as you fundraise. \nWe look forward to seeing you! \n  \n 
URL:https://www.nfmidwest.org/event/walk4nf-indianapolis/
LOCATION:White River State Park\, 801 W Washington Street\, Indianapolis\, IN\, 46204\, United States
CATEGORIES:Walks 4NF
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220710
DTEND;VALUE=DATE:20220717
DTSTAMP:20260405T194946
CREATED:20220516T192502Z
LAST-MODIFIED:20220516T202207Z
UID:10000086-1657411200-1658015999@www.nfmidwest.org
SUMMARY:Camp New Friends 2022
DESCRIPTION:July 10-July 16\, 2022 for all \nJuly 8-July 16\, 2022 for teens (optional) \nRegister and learn more at www.brainycamps.com/camps/neurofibromatosis.html. \nNF Midwest provides Brainy Camps/Camp New Friends funds assist with tuition and travel for campers from our region. Application must be made to Brainy Camps/Camp New Friends.
URL:https://www.nfmidwest.org/event/camp-new-friends-2022/
LOCATION:Blue Ridge School\, 273 Mayo Drive\, St. George\, VA\, 22935\, United States
CATEGORIES:Educational Events,NF Get Togethers,Camp
ORGANIZER;CN="Brainy Camps/Children's National Medical Center":MAILTO:info@brainycamps.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220604T100000
DTEND;TZID=America/Chicago:20220604T130000
DTSTAMP:20260405T194946
CREATED:20210218T182628Z
LAST-MODIFIED:20220516T210006Z
UID:10000069-1654336800-1654347600@www.nfmidwest.org
SUMMARY:Walk4NF Naperville\, IL
DESCRIPTION:Walk4NF Naperville Details\nGet ready for the 20th IN-PERSON Naperville Walk4NF (also known as Great Steps4NF)\, the largest walk and party in the park for NF in the country! \nPlus\, NF Midwest is celebrating 40 years as a chartered non-profit! \n(1) Register and learn much more at www.nfmidwest.org/walk4nfnapervilleas 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 on the right 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/walk4nfnaperville/
CATEGORIES:Walks 4NF
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220521T100000
DTEND;TZID=America/Chicago:20220521T140000
DTSTAMP:20260405T194946
CREATED:20220319T114126Z
LAST-MODIFIED:20220516T195858Z
UID:10000085-1653127200-1653141600@www.nfmidwest.org
SUMMARY:Walk4NF Madison
DESCRIPTION:Walk4NF Madison Details\nGet ready for the 10th IN-PERSON Madison Walk4NF (also known as Great Steps4NF)!  \nPlus\, NF Midwest is celebrating 40 years as a chartered non-profit! \n(1) Register and learn much more at www.nfmidwest.org/walk4nfmadison  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 on the right 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/2022-walk4nf-madison/
LOCATION:Capital Brewery\, 7734 Terrace Avenue \, Middleton\, WI\, 53562\, United States
CATEGORIES:Walks 4NF
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220507T100000
DTEND;TZID=America/Chicago:20220507T130000
DTSTAMP:20260405T194946
CREATED:20220319T113339Z
LAST-MODIFIED:20220319T113421Z
UID:10000084-1651917600-1651928400@www.nfmidwest.org
SUMMARY:Walk4NF Columbia
DESCRIPTION:Walk4NF Columbia Details\nGet ready for the 3rd Columbia Walk4NF (also known as Great Steps4NF)! \nPlus\, NF Midwest is celebrating 40 years as a chartered non-profit! \n(1) Register below as soon as possible so we know how many t-shirts\, volunteers\, and food to have. 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(2) 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 on the right will give you everything you need to get started! We’ll be here every step of the way! \n(3) 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!! \nKeep in mind t-shirts are ONLY guaranteed for participants who pre-register at least 3 weeks before the event. \nWe look forward to seeing you! \n  \n 
URL:https://www.nfmidwest.org/event/walk4nf-columbia/
LOCATION:Stephens Lake Park\, Columbia\, MO\, 2001 E Broadway\, Columbia\, MO\, 65201\, United States
CATEGORIES:Walks 4NF
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220430T193000
DTEND;TZID=America/Chicago:20220430T203000
DTSTAMP:20260405T194946
CREATED:20220304T181819Z
LAST-MODIFIED:20220304T181819Z
UID:10000083-1651347000-1651350600@www.nfmidwest.org
SUMMARY:1st Annual E's Hulkster Trivia Night
DESCRIPTION:Doors open at 6:30pm \nEntry deadline: April 25\, 2022 \nTeam (6-8 people): $80. Need a team? $15 and we’ll hook you up! \n\nCash prize for top team\nPrize for most decorated table\nMulligans\nSilent Auction\nBYOB & Snacks\n\nAll proceeds to benefit NF Midwest. Entry fee with name of team and phone # can be emailed or mailed. \nPlease make out checks to NF Midwest.
URL:https://www.nfmidwest.org/event/1st-annual-es-hulkster-trivia-night/
LOCATION:East Annex\, 801 E. Switzler\, Centralia\, MO\, 65240\, United States
CATEGORIES:DIY Fundraisers
ORGANIZER;CN="Dawni Henry":MAILTO:dawni.b.henry@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220322T173000
DTEND;TZID=America/Chicago:20220322T183000
DTSTAMP:20260405T194946
CREATED:20220304T175943Z
LAST-MODIFIED:20220304T182836Z
UID:10000082-1647970200-1647973800@www.nfmidwest.org
SUMMARY:Webinar: Learn About Camp New Friends
DESCRIPTION:Register for the Event
URL:https://www.nfmidwest.org/event/webinar-learn-about-camp-new-friends/
LOCATION:Online
CATEGORIES:Educational Events
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220310T200000
DTEND;TZID=America/Chicago:20220310T210000
DTSTAMP:20260405T194946
CREATED:20220118T162707Z
LAST-MODIFIED:20220304T182724Z
UID:10000081-1646942400-1646946000@www.nfmidwest.org
SUMMARY:Parent Group Meeting
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. \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-3/
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:20220127T190000
DTEND;TZID=America/Chicago:20220127T200000
DTSTAMP:20260405T194946
CREATED:20220117T173159Z
LAST-MODIFIED:20220117T220055Z
UID:10000080-1643310000-1643313600@www.nfmidwest.org
SUMMARY:NF Power Hour - ABLE Accounts
DESCRIPTION:Join us as Rosemary Laudani\, Manager of Illinois ABLE\, explains the benefits of ABLE (“Achieving a Better Life Experience”) accounts for people with disabilities….even if they aren’t on SSDI. \nAn ABLE Account is a tax-advantaged savings account that allows individuals with disabilities to save and invest money for many expenses without losing eligibility for certain means-tested public benefits programs\, such as Medicaid\, Supplemental Nutrition Assistance Program (SNAP)\, Supplemental Security Income (SSI)\, or Social Security Disability Insurance (SSDI). \nWe welcome anyone to attend this webinar. \nRegister
URL:https://www.nfmidwest.org/event/nf-power-hour-able-accounts/
CATEGORIES:Educational Events
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2022/01/Power-Hour-Able-Accounts-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20211113T090000
DTEND;TZID=America/Chicago:20211113T160000
DTSTAMP:20260405T194946
CREATED:20211019T180636Z
LAST-MODIFIED:20211019T180636Z
UID:10000079-1636794000-1636819200@www.nfmidwest.org
SUMMARY:Virtual Neurofibromatosis iNFo Fair
DESCRIPTION:NF Midwest\, Texas NF\, NF Northeast\, and The Littlest Tumor Foundation present an online day of learning for the NF community. This event is designed for\, and by\, patients and families affected by neurofibromatosis type 1 and neurofibromatosis type 2. Look for a separate event early in 2022 for schwannomatosis. \nThere will also be a Friday night “social” for patients and families to meet others. \nWe can’t get together in person\, so we’re bringing it right to you wherever you are! \nLearn more at www.nf-info.org.
URL:https://www.nfmidwest.org/event/virtual-neurofibromatosis-info-fair/
LOCATION:Online
CATEGORIES:Educational Events,NF Get Togethers
ORGANIZER;CN="NF Midwest%2C Texas NF%2C NF Northeast. Littlest Tumor Foundation":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20211017T170000
DTEND;TZID=America/Chicago:20211017T183000
DTSTAMP:20260405T194946
CREATED:20210819T183158Z
LAST-MODIFIED:20241003T145429Z
UID:10000078-1634490000-1634495400@www.nfmidwest.org
SUMMARY:Community Celebrathon
DESCRIPTION:Join us to celebrate the people\, the programs\, and the supporters of NF Midwest. It will be a casual hour or so with a drawing for great prizes and an unveiling of our top fundraising team and the walk t-shirt colors they selected for next year!\n\nPurchase entries for amazing prizes here.\n\nJoin us for the NF Community Celebrathon on the 17th on Zoom at www.nfmidwest.org/celebrathon or on our Facebook page at www.facebook.com/nfmidwest. You don’t need a Facebook account!
URL:https://www.nfmidwest.org/event/community-celebrathon/
LOCATION:Online
CATEGORIES:NF Get Togethers
ATTACH;FMTTYPE=image/png:https://www.nfmidwest.org/wp-content/uploads/2021/08/Facebook-Post.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210707
DTEND;VALUE=DATE:20210903
DTSTAMP:20260405T194946
CREATED:20210617T182058Z
LAST-MODIFIED:20210706T151550Z
UID:10000077-1625616000-1630627199@www.nfmidwest.org
SUMMARY:Hand to Heart Art 4NF
DESCRIPTION:Kalona is selling her art and plants to support NF1. Her granddaughter has neurofibromatosis and I am trying to help by creating art and selling plants.
URL:https://www.nfmidwest.org/event/13450/
CATEGORIES:DIY Fundraisers
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210626
DTEND;VALUE=DATE:20210701
DTSTAMP:20260405T194946
CREATED:20210512T202731Z
LAST-MODIFIED:20210512T203305Z
UID:10000076-1624665600-1625097599@www.nfmidwest.org
SUMMARY:Camp New Friends 2021
DESCRIPTION:Camp New Friends\, run by Brainy Camps from the Children’s National Medical center has redesigned its programming this summer to creatively mitigate COVID risk and ensure safe participation in their various camps.  For 2021\, there will be four different options for participation available depending on whether a child is vaccinated or not. The Camp New Friends programming will run from July 10—July 14th. NF Midwest will once again provide funding to Brainy Camps to assist campers from our region but you must apply through Brainy Camps. Please contact us if you’d like more information.   \n\nWe’ve summarized the options here\, however\, you can learn MUCH more and verify information as it may be changing at www.brainycamps.com.   \n\n\n\n\n\n\nProgram\nLength\nDate\nVaccine Req.\nCamperCost\nCITCost\n\n\nWeekend Getaway\n2 days\nJune 26-27\nNo\n$300\n \n\n\n5-Day Residential\n5 Days\nJune  26-30\nYes\n$850\n$650\n\n\nHybrid Weekend/3 Day Virtual\n5 Days\nJune 26-27\nNo\n$550\n$450\n\n\nVirtual Only\n3 Days\nJuly 12 –14\nNo\n$250\n 
URL:https://www.nfmidwest.org/event/camp-new-friends-2021/
LOCATION:Blue Ridge School\, 273 Mayo Drive\, St. George\, VA\, 22935\, United States
CATEGORIES:Educational Events,NF Get Togethers
ORGANIZER;CN="Brainy Camps/Children's National Medical Center":MAILTO:info@brainycamps.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210610T200000
DTEND;TZID=America/Chicago:20210610T210000
DTSTAMP:20260405T194946
CREATED:20210406T162227Z
LAST-MODIFIED:20210406T162227Z
UID:10000075-1623355200-1623358800@www.nfmidwest.org
SUMMARY:Parent Group Meeting
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. \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-6-10/
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:20210518T183000
DTEND;TZID=America/Chicago:20210518T193000
DTSTAMP:20260405T194946
CREATED:20210118T205240Z
LAST-MODIFIED:20210512T164035Z
UID:10000065-1621362600-1621366200@www.nfmidwest.org
SUMMARY:NF Open Chat
DESCRIPTION:A casual online get together to chat\, catch up\, share experiences and resources\, and ask questions within the NF Midwest community or to NF Midwest.
URL:https://www.nfmidwest.org/event/nf-open-chat/
LOCATION:Online
CATEGORIES:Educational Events,NF Get Togethers
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210515T100000
DTEND;TZID=America/Chicago:20210515T130000
DTSTAMP:20260405T194946
CREATED:20210312T211823Z
LAST-MODIFIED:20210319T165629Z
UID:10000070-1621072800-1621083600@www.nfmidwest.org
SUMMARY:Walk4NF YOUR WAY Madison\, WI
DESCRIPTION:Walk Your Way Madison Details\n1. Choose your place and people to walk with\nOur Madison walk is on this year\, except WHERE you walk and HOW you walk is up to you! Maybe you want to walk like a duck around a pond or backward down your street? \nPlan to walk somewhere\, some way\, with someone(s) on the morning of  May 15th within the social distancing recommendations of your community and in a way in which you feel safe. For instance\, you could have a nice crowd at your house\, join another team at a park or forest preserve\, or walk around the block with close family. \n2. Register; Order tshirts; Fundraise\nRegister as soon as possible as we plan to have challenges\, games\, and updates until the event. Participation is free (unless you want to charge for YOUR walk) 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. Arrange to get tshirts/goodies\nT-shirts will be available for pick-up or possibly delivery a week before from the office. We will also be in Madison on Friday and t-shirts may be picked up then. We also hope to have other goodies to give you! \n4. Buy raffle tickets\nSeveral days before the walk we will unveil raffle prizes online and allow for raffle ticket purchases online (or when you get your t-shirts).  \n5. May 15th walk and join us virtually (or in person)\nYou’ll also be able to join us virtually for raffle and prizes (including team with most flair). Sign-up\, make your plans and will have more details soon.  \nOn the morning of the walk\, we’ll set up somewhere in the Madison area. We’ll have a room open online starting a 10 AM for walkers and teams to drop in and you’ll be invited to post videos\, photos\, and comments on Facebook as well.  At NOON we’ll draw raffle winners online and crown the team with the most “flair”\, as well as acknowledge our top fundraisers. \n 
URL:https://www.nfmidwest.org/event/great-steps-walk-4-nf-madison/
CATEGORIES:Walks 4NF
ORGANIZER;CN="NF Midwest":MAILTO:info@nfmidwest.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210513T200000
DTEND;TZID=America/Chicago:20210513T210000
DTSTAMP:20260405T194946
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210505T183000
DTEND;TZID=America/Chicago:20210505T193000
DTSTAMP:20260405T194946
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:20260405T194946
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210408T200000
DTEND;TZID=America/Chicago:20210408T210000
DTSTAMP:20260405T194946
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:20260405T194946
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:20260405T194946
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:20260405T194946
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:20260405T194946
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:20260405T194946
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
END:VEVENT
END:VCALENDAR