• About Us
    • Mission/History
    • Leadership/Staff
    • Financials and FEIN
    • Privacy Policy
  • Shop
  • Contact Us
  • Give
43 Years of Care and Ensuring No One Fights Alone!
Neurofibromatosis Midwest

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

  • What We Do

    “Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine.  We were no longer alone.  They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away.  Trust me when I say my NF is much easier with them in my corner. ”
    -Myshell

    • Clinics
    • Raising Awareness
    • Research
    • Education
    • Support
    • Scholarships
    • Young Adult Leadership
    • Testimonials
  • Get Involved

    “..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
    -Sue

    • Join the Community
    • DIY Events
    • Participate in Research
    • Ways to Give
    • Raising Awareness
    • Walk4NF Events
    • Volunteer
    • Join the Dream Team
    • Share Your Story
    • Join the Board
  • Learn

    “I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
    -Jessica

    • Find A Doctor
    • What is NF?
    • NF Type 1
    • NF2-SWN
    • Other SWN
    • Be iNFormed Database
    • Resources
    • iNFo Fair
    • Faces of NF
    • Research Trials and Studies
  • Events

    “{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate

    • Walk4NF
    • All Events
  • News/Blog

    “Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29

    • Research
    • Education
    • Clinics/Care
    • Events
    • Giving
    • Faces of NF
    • Past Newsletters
    • Behind The Scenes
  • Support
10 events found.

Events Search and Views Navigation

Event Views Navigation

  • List
  • Month
  • Day
  • Photo
Today
  • August 2025

  • Fri 1
    August 1, 2025 | 6:00 pm - 8:00 pm CDT

    Neurofibromatosis and a Portrait of 1 in 3,000: Ashok Shrestha’s Transformation

    International Museum of Surgical Sciences 1524 North Lake Shore Dr, Chicago, Illinois

    Join NF Midwest, NF physicians, the NF community, and others in celebrating the work of artist Rachel Mindrup and the...

    FREE
  • Sat 2
    August 2, 2025 | 8:30 am - 2:00 pm CDT

    NF1 Family Symposium at Lurie Children’s Hospital

    Ann & Robert H Lurie Children's Hospital 225 E Chicago Ave, Chicago, Illinois

    Topics:Basics of NF1, Research Updates, Genetic Counseling in NF, and Neuropsychology, IEP's, and Social Work in NF.

  • Thu 21
    August 21, 2025 | 9:00 pm CDT

    NF1 PN Educational Event hosted by Alexion

    Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform...

  • September 2025

  • Sun 21
    Featured September 21, 2025 | 6:00 am - 6:00 pm CDT

    2025 North Shore Century Ride

    A Collaboration with Children's Tumor Foundation. The NSC ride is organized by the Evanston Bicycle Club. Join the NF Midwest...

  • October 2025

  • Wed 1
    October 1, 2025 | 8:00 am - November 30, 2025 | 6:00 pm CDT

    Champions of the Fall

    Two Months. One Champion. Rally Your Crew! A maximum of five individual or crews may sign up for NF Midwest's...

  • Sat 25
    Featured October 25, 2025 | 8:00 am - 4:00 pm CDT

    2025 iNFo Fair

    The theme this year is being "Be Proactive, Be Informed, Be Heard!" Join us for an all-day iNFo Fair in...

  • Sun 26
    Featured October 26, 2025 | 6:00 pm - November 26, 2025 | 6:00 pm CDT

    $500 Wednesday Windfall

    🎁 Get ready for a little holiday windfall! On Wednesday, November 26th—just before Thanksgiving, Black Friday, and Cyber Monday—one lucky...

  • Wed 29
    October 29, 2025 | 7:00 pm - 8:00 pm CDT

    Transitioning to Adult Care

    Joe Booe, Patient Education Manager from Alexion Pharmaceuticals, will share information about transitioning to adult care. Objectives: This is a virtual...

  • December 2025

  • Wed 10
    December 10, 2025 | 7:00 pm - 8:00 pm CST

    Navigating Stress and Cultivating Wellness

    Gina Friesl, Patient Education Manager from Alexion Pharmaceuticals, will share information about Navigating Stress and Cultivating Wellness. Objectives: This is a...

  • January 2026

  • Mon 5
    January 5 - January 9

    Young Leadership Program

    Are you a passionate young adult looking to make a difference? The NF Young Adult Leadership Program is your chance...

  • Previous Events
  • Today
  • Next Events
  • Google Calendar
  • iCalendar
  • Outlook 365
  • Outlook Live
  • Export .ics file
  • Export Outlook .ics file

Get the Latest NF News & Updates

Sign up to be notified of new posts to our website.

  • About NF Midwest
    • Mission/History
    • Leadership/Staff
    • Financials
    • Privacy Policy
  • Ways to Help
    • Donate
    • NF Midwest Walks4NF
    • Ways to Give
    • Shop
  • News/Blog
  • Past Newsletters
  • Email for Support
  • Join the Community
  • Participate in Research
  • Raising Awareness
  • Volunteer
  • What is NF?
  • NF Type 1
  • NF2-Related Schwannomatosis
  • Schwannomatosis
  • Be iNFormed Database
  • Research Trials and Studies
  • Resources
  • Resource Submission
High Impact Research Match Great Non Profits Badge Candid Gold Seal of Transparency 2025 Community Health Charities Combined Federal Campaign NF Collective Member
Donate

© 2026 Neurofibromatosis Midwest - non profit 501(c)(t3). Site Map - Privacy Policy
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.

fb-share-icon
Visit Us
Follow Me
Tweet
Share