“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
“..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
“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
“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
The theme this year is being “Be Proactive, Be Informed, Be Heard!“
Join us for an all-day iNFo Fair in Naperville, Illinois, on Saturday, October 25th. Don’t miss this unique opportunity to learn. It’s also a great chance to connect with others, which is essential for building support.
LOCATION:
Northern Illinois University – Naperville Campus 1120 East Diehl Road Naperville, IL 60563
TIME:
Continental Breakfast starts at 8:00 am CST Sessions start at 9:00 am CST The day will end at approximately 4:00 pm CST
COST:
$25 for Adult $10 Children ages 5 to 17 Kids will enjoy activities in the Kids Group
TOPICS/SESSIONS Some topics are still being added or refined
Patient & Care Partner Panel: Proactive in Action Hear directly from individuals living with NF and the people who support them. This panel will share real experiences of being proactive—whether in seeking treatments, building resilience, or finding resources. Learn from their stories, gain practical insights, and connect through shared lessons that can help guide your own NF journey.
Genetic Testing: Taking a Proactive Step Genetic testing can be an important way to take charge of your NF journey. In this session, we’ll explore how to access testing, what it costs, and whether it’s the right choice for you or your family. Learn the benefits, limitations, and what results can reveal—so you’re equipped with the knowledge to make informed, proactive decisions.
Productive Conversations with Healthcare Providers Joe Booe, Alexion Patient Education Manager
NF1 BREAKOUT TOPICS
Let’s Talk Tumors: Understanding and Taking Action
Presented by Shawn Damodharan, DO; Director of Pediatric Neuro-Oncology at the University of Chicago and Nicholas Pytel, DO; pediatric neuro-oncologist from the University of Wisconsin.
Tumors are one of the most common—and most complex—parts of living with NF type 1. This in-depth session Drs. Shawn Damodharan and Nicholas Pytel discuss the different types of tumors, treatment options, and what we know about when and why they may appear, including during life stages such as adolescence or pregnancy. We’ll also look at factors like injuries and genetic “second hits.” By arming yourself with knowledge, you can better understand what’s happening in the body and be proactive in making care decisions.
Neuropsychological Testing in NF1: Tools for Learning and Living
Dr. Jonathan Mietchen, pediatric neuropsychologist from the University of Wisconsin, will guide us through what neuropsychological testing is and how it works. This testing explores how the brain functions—highlighting learning, memory, attention, and social skills. Results can reveal both strengths and challenges, giving individuals and families practical tools to be proactive in school, work, and daily life. With this knowledge, testing can open doors to greater support, confidence, and resilience.
NF2 BREAKOUT TOPICS
The NF2 session is still in development. It will be led by Dr. Justin Jordan, MD, MPH, FAAN
SUDARSHAWN DAMODHARAN, DO – iNFo Fair Co-Chair
Dr. Damodharan is the Director of Pediatric Neuro-Oncology at the University of Chicago and the Chicagoland Children’s Health Alliance—a partnership between Advocate Children’s Hospitals, Endeavor Health System, and the University of Chicago. He provides specialized clinical care for children and young adults with brain tumors, neurofibromatosis type 1 (NF1), and NF2-related schwannomatosis.
His research focuses on advancing the understanding and development of novel therapeutic strategies for pediatric brain tumors. In addition, he is committed to exploring the epidemiology and long-term outcomes of patients with NF1 and NF2-related schwannomatosis, with the goal of improving both treatment options and quality of life.
NICHOLAS PYTEL, DO – iNFo Fair Co-Chair
Dr. Pytel
JUSTIN JORDAN, MD, MPH, FAAN
Dr. Jordan is Associate Professor of Neurology with a secondary appointment in the Peter O’Donnell Jr. Brain Institute at the University of Texas Southwestern Medical Center in Dallas, Texas. He serves as Head of the Neuro-Oncology Section, where he also runs a comprehensive clinic for adult patients affected by NF1 and schwannomatosis. Dr. Jordan also has a long history of leading research efforts related to NF1 and schwannomatosis, including work on interventional clinical trials for cutaneous neurofibromas, plexiform neurofibromas, and gliomas in NF1, all tumor types in NF2-related schwannomatosis, and chronic pain in non-NF2-related schwannomatosis. He has collaborated or led research investigations on novel imaging techniques including longitudinal whole body MRI scans, radiomics, and high-frequency ultrasound to advance our understanding of tumor behavior over time. Finally, Dr. Jordan has a strong interest in improving quality of care for patients affected by NF1 and schwannomatosis; he has published on both physician and patient-reported care patterns as they relate to published care recommendations, and is engaged in collaborative work at multiple levels to improve care for all. He serves as chair of the Scientific Advisory Committee for Neurofibromatosis Network, and is a member of the Clinical Care Advisory Board within the Children’s Tumor Foundation.
JONATHAN MIETCHEN, PHD
Jon Mietchen is a pediatric neuropsychologist and an assistant professor in the Department of Neurology at the University of Wisconsin School of Medicine and Public Health.
He completed his PhD in Neuropsychology at Brigham Young University. He completed his residency at the University of Kansas School of Medicine and he completed his fellowship at the University of Wisconsin School of Medicine and Public Health.
Jon specializes in cognitive and neuropsychological evaluations for children and adolescents with medical disorders, including NF. These assessments look for strengths and challenges a child may have in memory, attention, executive function skills, and learning.
He has presented research related to neuropsychological screening and NF1 at the Children’s Tumor Foundation and the Society for Neuro-oncology.
A small block of rooms has been reserved at the Courtyard by Marriott for $114 per night. Rooms must be reserved before the number of blocked rooms runs out and by October 3rd to get that rate (whichever comes first!)
This hotel is within walking distance of the iNFo Fair Venue.
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