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2019 Symposium and iNFo Fair

November 9, 2019 | 8:00 am - 4:30 pm CST


Adult Registration: $25

Children 13 to 17: $10

Children 5 to 12: FREE

Traveling over 90 miles one way to the event (Coupon Code = 90miles): FREE

be iNFormed!

Join us for an exciting day in which you will learn from the experts and share experiences about neurofibromatosis, including the latest progress in NF research, current treatment options, and practical advice for living with NF. We have scheduled presenters, but we also provide tables of iNFormation and build in time for people to meet and talk with others including our experts and presenters.

8:00 – 9:00 am Check-in, Continental Breakfast, and Socializing

CART (Captioning will be provided for MOST sessions. Email us for more info at )

We will also be holding a “gathering” on Friday night. We haven’t firmed up what that will be, but it will be a time to get together with others who arrived early or live in the area and want to meet.

Financial assistance to attend NF Midwest’s Symposium is available. Please email . Include a description of your financial need and how you hope to benefit from attending.


Topics are  NOT IN ORDER of the actual schedule and may be subject to change. There will also be opportunities that aren’t listed here for meeting and talking with others.

  • NEW NF1, NF2 AND SCHWANNOMATOSIS DIAGNOSTIC CRITERIA – Robert Listernick, MD, Lurie Children’s Hospital and NF Clinic, Chicago, IL
  • ENCOURAGING SOCIAL CONNECTIONS AND ADAPTIVE BEHAVIORS. HOW PARENTS CAN HELP! Sandra Cushner-Weinstein LICSW, director of Brainy Camps and Camp New Friends, and a social worker from the Children’s National Medical Center in Washington, DC 
  • GENE THERAPY/GENE EDITING – Robert Kesterson, PhD, University of Alabama, Department of Genetics
    • Genetics and Biology of Cutaneous Neurofibromas – Matt Steensma, MD, Spectrum Health, Francis S Collins Scholar
    • Natural History of and Drug Treatments of Cutaneous Neurofibromas– Ashley Cannon, PhD, MS, CGC, University of Alabama
    • Surgical Management of Cutaneous Neurofibroma: Current Therapy and Future Directions – Lu Le, MD PhD,  University of Texas Southwestern Medical Center
    • Research Update: Photodynamic Therapy on Cutaneous Neurofibromas—Marsha Malloy, RN, BSN, MBA, Medical College of Wisconsin
  • NF1 TOPIC: OPTIC GLIOMAS/RESEARCH AND TREATMENT UPDATE – Robert Listernick, MD, Lurie Children’s Hospital and NF Clinic, Chicago, IL
  • NF 2 TOPIC: HEARING REHABILITATION IN NF2 – Auditory Brainstem and Cochlear Implantation – Kevin Peng, MD, Otologist/Neurotologist, House Clinic. Los Angeles, CA
  • NF 2 TOPIC: DISCOVERIES FROM SYNODOS FOR NF2 and Identification of Natural Compounds to Treat NF1 and NF2 Tumors  – Long-Sheng Chang, PhD, Professor, Abigail Wexner Research Institute at Nationwide Children’s Hospital and The Ohio State University College of Medicine
  • NF 2 TOPIC: NF2 BIOSOLUTIONS – Accelerating Gene Therapy Research for Neurofibromatosis Type 2 – John Manth, Board Member

(We are still working tables, but look for there to be a lot of information. We will have a table time where all speakers will be available for more discussion)

During a special “table time” and other breaks you will be able to visit the areas that interest you and talk to an expert or advocate. The following are the tables we hope to have available. We will be adding more.

  • Participating in Research
  • Pain
  • Learning Disabilities and School Issues
  • NF Clinics
  • Making a Difference—Raising Funds and Awareness

Children age 5 to 17 are welcome to come and participate in our kids’ groups. They’ll enjoy a day of fun, friendship, and food! Cost is $10 for children ages 13 to 17. Children ages 5 to 12 are free.


Registration fee includes continental breakfast, buffet lunch and afternoon snack…and of course invaluable information and the chance to meet others. If you have financial difficulties please contact us to see if we can waive your fee.

If you’d like to avoid the extra ticketing fee for buying your ticket online you may call the office to register at 630.945.3562.

We are unable to refund any tickets purchased.

This is an event meant for those affected by neurofibromatosis and their families. If you wish to attend this symposium for other reasons but don’t have a connection to NF, please contact us via email at or by calling 630-945-3562.

A block of rooms is available at the Chicago Marriott Northwest/Hoffman Estates for $89 a night. A shuttle can take you to and from the venue if needed. You can make a reservation here or call (847) 645-9500 and ask for the NF Midwest group rate.

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