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.

8:00 – 9:00 am Registration, Continental Breakfast, and Socializing

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

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SCHEDULED PRESENTATIONS

(Topics are NOT in order of the actual schedule and may be subject to change)

• NF1 OVERVIEW AND SCOLIOSIS RESEARCH UPDATE – Presented by Christopher Moertel, MD, Pediatric Neuro-Oncologist and director of the University of Minnesota NF Clinic

• BEES, TEAS, TREES AND MORE – What we know about alternative therapies in Neurofibromatosis – Presented by Kaleb Yohay, MD, Neurologist and NF clinic director at NYU Langone Medical Center

• MEK INHIBITORS AND MORE – Breakthroughs and hurdles in finding new treatments for NF-associated plexiform neurofibromas and optic gliomas – Presented by Nicole Ullrich, MD,  PhD, Neurologist/Neuro-Oncologist, Boston Children’s Hospital.

• The Role of Minimally Invasive Brain Surgery and the Genetics of Grade 1 and Grade 2 Meningiomas in Patients with Neurofibromatosis Type 2 – Presented by Anand Germanwala, MD Neurosurgeon and Otolaryngologist from the Loyola University Stritch School of Medicine.

• NF2 Research Update – Presented by Nicole Ullrich, MD,  PhD, Neurologist/Neuro-Oncologist, Boston Children’s Hospital.

• PAIN IN NF – Important pain survey results; potential alternative strategies for handling pain; and how to advocate with doctors regarding your pain. Presented by Frank Buono, PhD Associate Research Scientist in the Department of Psychiatry at the Yale University School of Medicine.

• COPING WITH A CHRONIC DISORDER – The challenges of coping with chronic disorders like neurofibromatosis and a review of concrete coping tools and strategies to help. Presented by Edna Romero, PhD, a medical psychologist from Lurie Children’s Hospital in Chicago. 

• MY DOCTOR DOESNT’T KNOW ENOUGH ABOUT NF! How to improve your overall health through a better primary care relationship. Presented by Jason Marker,  MD a family practice and primary care physician from Indiana.

• INSIDE SCOOP ON HANDLING SCHOOLS INCLUDING IEPS – Practical tips and information on dealing with schools from a school psychologist and parent of a child with NF1. Presented by Dena Regalado-Hasselberg. (Note: Dena has included material that may help parents here)

INFORMATION TABLES

(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 tables we hope to have available. We will be adding more.

• Participating in Research
• Association for Late Deafened Adults (ALDA)
• Pain
• Learning Disabilities and School Issues
• NF Clinics
• Making a Difference—Raising Funds and Awareness
• Information regarding children with NF
•  Adults with NF

KIDS GROUP

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 over 12. Children ages 5 to 11 are free.

REGISTRATION

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 info@nfmidwest.org or by calling 630-945-3562.

FINANCIAL ASSISTANCE OR OTHER ASSISTANCE

If you’d like to attend but need financial assistance or additional help getting to the event, please call 630-945-3562 or email .

HOTEL RESERVATIONS

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

Note: The registration window will open at the bottom of this page BELOW the registration button. Be sure to scroll down.