NF1 PN Educational Event hosted by Alexion
2025-01-28 20:00 - 21:00 (America/Chicago)
Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN).

TOPIC: Navigating Stress, Cultivating WellnessWHO: Katie Jones – Patient Education ManagerWHEN: Tuesday, January 28, 2025 – 9:00 PM ET/8:00 PM CT/7:00 PM MT/6:00 PM PTWHERE: VirtualCOST: Free

REGISTER FOR THIS EVENT

To register and/or learn more about events, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will:

Explores a variety of techniques for stress management.Examines the triggers and symptoms of stress.

For more information about Alexion Programs, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you, use the PEM finder at AlexionOneSource.com/pem-finder.

NF1_Digital Flyer_1.28.2025Download

NF1 PN Educational Event hosted by Alexion
2025-02-11 20:00 - 21:00 (America/Chicago)
Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN).

TOPIC: Caregivers Need Care, TooWHO: Regina Zambrano, MDWHEN: Tuesday, February 11, 2025 – 7:00 PM ET/6:00 PM CT/5:00 PM MT/4:00 PM PTWHERE: VirtualCOST: Free

To register and/or learn more about events, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will:

Be provided a realistic and humanized approach to an often-sensitive topic.Caregivers will be equipped with the information and resources needed to allow them to advocate for their child and their wellness throughout their NF1 journey.

For more information about Alexion Programs, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you, use the PEM finder at AlexionOneSource.com/pem-finder.

NF1_Digital Flyer_2.11.2025Download

Clinical Trials for Treating Pain in Schwannomatosis
2025-02-25 18:00 - 19:00 (America/Chicago)
Join us to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis. We’ll share information on the latest advancements in schwannomatosis pain research from the lab to the clinic, including information on the tanezumab and STARFISH clinical trials.

Vanessa Merker, PhD from Massachusetts General Hospital/Harvard Medical School will present, and take questions about clinical trials for schwannomatosis.

REGISTER

All About NF1, PN, and a Treatment Option
2025-03-27 20:00 - 21:00 (America/Chicago)
Please refer to the flyer for information. Presented by Alexion Pharmaceuticals, Inc.

KOSELUGO Educational Event Flyer_DIGITAL_3.27.2025Download

SamJam Finale!
2025-04-26 17:00 - 23:00 (America/Chicago) | The Rustic Venues, 24720 N. Standard City Road, Girard, Illinois, 62640, United States
SamJam Benefit Concert Aims to Reach $100,000 Milestone for NF Research

Date: Saturday, April 26, 2025Time: 5:30 PM – LateLocation: The Rustic Venues – Girard, IL

Join us for the 10th annual SamJam benefit concert! Having raised over $90,000 in its first nine editions for NF Midwest, Inc., this year’s event aims to break the $100,000 mark. All proceeds support vital research grants and support services for those affected by neurofibromatosis in Illinois and five surrounding states.

Event Highlights:

Delicious BBQ Dinner featuring smoked brisket and pulled pork with all the trimmings

Full Cash Bar

Silent Auction & 50/50 Raffle

Caribbean Cruise Giveaway (one entry per adult ticket, additional entries available for purchase)

Featured Performers:

ClusterPluck (5:30 PM)This southern Illinois four-piece returns after successful shows in 2015, 2016, and 2019. They blend bluegrass, folk, rock, jam, and country. The band features a unique instrumental mix with four-part harmonies. They’ve toured the US and Canada since 2010. Past collaborations include Grammy winners Sam Bush and Del McCoury.

The HillBenders (8:00 PM)This Springfield, Missouri band headlines with their “bluegrass meets rock n’ roll” sound. They’re known for high-energy shows and humor. The HillBenders have toured globally. Rock legend Pete Townshend of The Who has praised their work.

“We aim to push past the $100,000 mark this year,” says organizer Peter Oswald. “Our community has been amazing. We hope everyone will help us again.”

Enjoy great music while supporting an important cause!

Meet the MEKs: A Power Hour 4NF
2025-04-29 17:30 (America/Chicago)
Learn about both MEK inhibitors, GOMEKLI and Koselugo, used to treat plexiform neurofibromas in NF1 with Dr. Shawn Damodharan from the University of Chicago. This is a great opportunity if you want to learn more about the drugs, or are considering going on one.

REGISTER

This is a virtual event.

2025 Walk4NF Madison, WI
2025-05-10 09:00 - 13:00 (America/Chicago) | Capital Brewery, 7734 Terrace Avenue , Middleton, WI, 53562, United States
Walk4NF Madison Details
Get ready for the annual Madison Walk4NF and support those with neurofibromatosis!
Plus, NF Midwest is celebrating over 43 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Madison as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.
(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.
(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 will give you everything you need to get started! We’ll be here every step of the way!
(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!! All this helps to create awareness of neurofibromatosis and the need to support those with it.

Meet MEK Users: A Power Hour 4NF
2025-05-27 17:30 (America/Chicago)
Thinking about starting a MEK inhibitor like KOSELUGO or GOMEKLI for yourself or your child? Already on one and want to connect with others who get it?

Join us for Meet MEK Users — a real-talk community conversation where adults with NF1 and parents of kids on MEK inhibitors come together to share what it’s really like. The ups, the side effects, the surprises, and the moments of hope.

No doctors. No pressure. Just honest stories from people walking the MEK path.

REGISTER

This is a virtual event.

2025 Walk4NF Columbia, MO
2025-05-31 09:00 - 13:00 (America/Chicago) | Stephens Lake Park, Columbia, MO, 2001 E Broadway, Columbia, MO, 65201, United States
Walk4NF Columbia Details
Get ready for the annual Columbia Walk4NF and support those with neurofibromatosis!
Plus, NF Midwest is celebrating over 43 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Columbia as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.
(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.
(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 will give you everything you need to get started! We’ll be here every step of the way!
(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!! All this helps to create awareness of neurofibromatosis and the need to support those with it.

2025 Walk4NF Naperville, IL
2025-06-07 08:30 - 13:00 (America/Chicago) | Grand Pavilion @ Riverwalk Park – Naperville, 912 Honorary Sindt Memorial Ct, Naperville, Illinois, 60540, United States
Walk4NF Naperville Details
Get ready for the 23rd Naperville Walk4NF – the grandaddy of them all supporting those affected by neurofibromatosis!
Plus, NF Midwest is celebrating over 43 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Naperville as soon as possible. T-shirts are only guaranteed to those who register at least two weeks before the events.
(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.
(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 will give you everything you need to get started! We’ll be here every step of the way!
(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!! All this helps to create awareness of neurofibromatosis and the need to support those with it.

Neurofibromatosis and a Portrait of 1 in 3,000: Ashok Shrestha’s Transformation
2025-06-20 18:00 - 20:00 (America/Chicago) | International Museum of Surgical Sciences, 1524 North Lake Shore Dr, Chicago, Illinois, 60610
Neurofibromatosis and a Portrait of 1 in 3,000: Ashok Shrestha’s Transformation is a powerful exhibition featuring nine works of printmaking, drawing, and painting by artist Rachel Mindrup, chronicling the medical journey and personal resilience of Ashok Shrestha, a young man from Nepal living with NF.

In 2016, Ashok began fundraising to travel to the U.S. for life-altering surgery after NF caused significant facial disfigurement. He arrived in Chicago in late 2017 to undergo a series of complex procedures led by renowned reconstructive surgeon Dr. McKay McKinnon. These surgeries included cranial reconstruction and the placement of a prosthetic eye, made possible by over $70,000 in grassroots donations organized by Mindrup and community partners.

Mindrup, an associate professor at Creighton University and the Richard L. Deming, MD Endowed Chair in Medical Humanities, met Ashok while exhibiting her NF awareness portraits in Nebraska. She has painted over 110 portraits as part of her ongoing series, Many Faces of Neurofibromatosis, using art to elevate stories, raise awareness, and foster empathy.

INFO AND REGISTRATION

NF1 PN Educational Event hosted by Alexion
2025-07-31 18:00 (America/Chicago)
Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN).

TOPIC: All about NF1 PN and a treatment optionWHO: Regina Zambrano, MDWHEN: Thursday, July 31, 2025 – 7:00 PM ET/6:00 PM CT/5:00 PM MT/4:00 PM PTWHERE: VirtualCOST: Free

To register and/or learn more about events, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will learn more about:

NF1 PN and a treatment option

Support for families taking Koselugo

How Koselugo can help

For more information about Alexion Programs, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you, use the PEM finder at AlexionOneSource.com/pem-finder.

Neurofibromatosis and a Portrait of 1 in 3,000: Ashok Shrestha’s Transformation
2025-08-01 18:00 - 20:00 (America/Chicago) | International Museum of Surgical Sciences, 1524 North Lake Shore Dr, Chicago, Illinois, 60610
Join NF Midwest, NF physicians, the NF community, and others in celebrating the work of artist Rachel Mindrup and the courage of Ashok Shrestha.

You’re invited to a special evening reception at the International Museum of Surgical Science for the powerful exhibit:

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

Through a series of portraits by acclaimed artist Rachel Mindrup, this exhibit captures the evolving story of Ashok Shrestha, a man living with NF1. It’s an intimate and moving exploration of identity, visibility, and strength in the face of NF.

This event is FREE and open to all. Guests will also have full access to explore the museum’s galleries (a $25 value). Wine, beer, soda, and water will be available. Children are welcome.

Several NF physicians will be attending and may take questions, offering a chance for meaningful connection between medical professionals and the community.

Let’s gather to reflect, connect, and honor the combining of art, medicine, and individuals that make the NF story visible.

INFO AND REGISTRATION

NF1 Family Symposium at Lurie Children's Hospital
2025-08-02 08:30 - 14:00 (America/Chicago) | Ann & Robert H Lurie Children’s Hospital, 225 E Chicago Ave, Chicago, Illinois, 60611
Topics:Basics of NF1, Research Updates, Genetic Counseling in NF, and Neuropsychology, IEP’s, and Social Work in NF.

NF1 PN Educational Event hosted by Alexion
2025-08-21 21:00 (America/Chicago)
Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform neurofibromas (NF1 PN).

TOPIC: Advocating for Your ChildWHO: Katie Jones, PEMWHEN: Thursday, August 21, 2025 – 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PTWHERE: VirtualCOST: Free

To register and/or learn more about events, call 888-210-0174 or visit https://bit.ly/3R8Osfa.At this event you will:

Explore ways to support your child in school and healthcare settings, including gaining more information about individualized education programs (IEPs).

For more information about Alexion Programs, reach out to an Alexion Patient Education Manager (PEM).To find the PEM closest to you, use the PEM finder at AlexionOneSource.com/pem-finder.

2025 North Shore Century Ride
2025-09-21 06:00 - 18:00 (America/Chicago)
A Collaboration with Children’s Tumor Foundation. The NSC ride is organized by the Evanston Bicycle Club.

Join the NF Midwest and CTF on September 15 for the 39th annual North Shore Century — Chicagoland’s premiere cycling event. Ride through beautiful neighborhoods, view unique architectural treasures, and feel the refreshing breezes of Lake Michigan. Choose between four “century” distances – Classic, Metric, Half or Quarter – and enjoy a fully supported ride featuring fabulous food, mechanical support, and on-course SAG vehicles – all while making a difference for those living with NF. And as a charity rider, you’ll save 10% on race registration. The race will be capped at 2,400 riders, so sign up today!

REGISTRATION PROCESS

Sign up to join the NF Midwest Team and THEN for the ride. Use the code CTFNSC to receive a 10% discount on the registration fee of $40 (this goes up if you register after September 8th). However, the number of riders is capped at 2,400 so spots could be gone soon!

STEP 1

Register with NF Midwest – this will give you support in your efforts and allow you to create fund raising page.

Go to https://give.nfmidwest.org/NorthShore2024

Click REGISTER

Join or start your own team.

Fill out all registration detailsand check out

STEP 2

Register for the North Shore Century Ride

Go to North Shore Century 2024 – Sunday, Sept. 15 (active.com)

Click Register Now! You will have to pay a separate fee to the bike club to participate.

Select Registration type(Adult or Child)

Enter all registration details

PDF WITH MORE INFO TO PRINT AND SHARE

Champions of the Fall
2025-10-01 08:00 - 2025-11-30 18:00 (America/Chicago)
START YOUR CREW OR JOIN ONE TODAY!

Two Months. One Champion. Rally Your Crew!

A maximum of five individual or crews may sign up for NF Midwest’s Champions of the Fall (COTF) fundraising and awareness campaign kicking off on October 1st. The goal is to raise funds and awareness from October 1st through November 30th. The difference is that participants may create events and NF Midwest will guide and support them. They may also participate in opportunities provided by NF Midwest.

Consider starting creating a crew at work, school, in you neighborhood, or with fun friends and family!

Learn about why you should participate and how it works below!

Let’s work together to create a brighter future for those affected by NF.

Why Participate?
Make a Difference: Your contributions will fund critical research and support programs for individuals affected by NF.

Connect with Your Community: Build lasting relationships while working towards a common goal.

Have Fun: Enjoy a variety of engaging events and activities while making a difference.

Be Recognized: Top fundraisers will receive special recognition and prizes.

How It Works!
Assemble Your Crew: Starting October 1st, rally your friends and family to form your COTF crew! The campaign runs until November 30th, so plenty of time to make a BIG impact.

Join the Fun & Fundraise: Throughout the campaign, NF Midwest will provide support and ideas, and ways to raise funds and awareness. Each crew and fundraiser will have their own page to direct donors to.

Host Your Own Events: Get creative with your fundraising! Host a football viewing party, throw a Halloween bash, or even go trick-or-treating 4NF! Whatever sparks joy, make it your own and have fun while supporting a great cause!

Boost Your Walk4NF team: If you’re gearing up for a Walk4NF in 2026, funds raised during your efforts can be added to your Walk4NF efforts once you register for a walk.

Crown a Champion: One crew will be crowned the Champion of the Fall, a title that will surely include prizes and pride.

Interested in Participating? Let Us Know With This Form, and We’ll Help You!

DIY Interest Form
Use this form to let us know if you have an interest in participating in the Champions of the Fall or creating a DIY fundraiser. Helping NF Midwest fundraise during October and November to raise funds using the Do It Your WAY method will help to support NF Midwest and its programs of education, outreach, and support.

CommentsThis field is for validation purposes and should be left unchanged.Name(Required)

First

Last

Why are you interested in participating in the Champions of Fall or in creating a DIY Event?(Required)Phone(Required)Email(Required)

START YOUR CREW OR JOIN ONE TODAY!

2025 iNFo Fair
2025-10-25 08:00 - 16:00 (America/Chicago)
REGISTRATION AND DONATION PAGE

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 Extension Building1120 East Diehl RoadNaperville, IL 60563

TIME:

Continental Breakfast starts at 8:00 am CSTSessions start at 9:00 am CSTThe day will end at approximately 4:00 pm CST

COST:

$25 for Adult$10 Children ages 5 to 17Kids will enjoy activities in the Kids Group

TOPICS/SESSIONS

FINAL SCHEDULE

GENERAL TOPICS
Interactive Session: Learning about NF and Getting to Know You!We’re kicking off the iNFo Fair with something new—a relaxed, interactive session that helps us learn with and about our community. Using an easy-to-join app, we’ll ask questions like what brought you here, what you hope to learn, and how NF touches your life. Then we’ll dive into a light NF knowledge quiz—with answers and a few prizes along the way! It’s a comfortable way to start the day, learn together, and connect with others who understand NF. Ohhh…and there will be some prizes!

Patient & Care Partner Panel: Proactive in ActionHear 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.

Productive Conversations with Healthcare Providers Clear, confident communication is one of the most powerful tools you have in managing your health. This interactive presentation will help you build the skills to make the most of every appointment. Learn the key components of productive conversations, discover strategies to ensure your questions and concerns are heard, and explore ways to work effectively with physicians and the broader care team. You’ll leave with practical tips and resources to support stronger, more collaborative relationships with your healthcare providers.

Genetic Testing: Taking a Proactive StepGenetic testing can be an important way to take charge of your NF journey. In this session, Jordyn Prell, a genetic counselor from Children’s Hospital of Wisconsin, we’ll help us 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.

Scans in NF: The Great MRI DebatesWhole-body MRIs? Baseline MRIs? Not everyone agrees. In this session, Dr. Listernick from Lurie Children’s Hospital, will debate the pros and cons of different approaches, while also giving a clear overview of the types of scans used in NF and when they’re most helpful. You’ll leave with balanced perspectives and practical knowledge to guide proactive decisions about imaging.

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-related schwannomatosis session will be presented byJustin Jordan, MD, MPH, FAAN

The Basics of NF2-related SchwannomatosisDr. Jordan will lead a discussion on tumor types, symptoms, genetics, and clinical care recommendations in NF2-SWN. Followed by a Q&A session.

Treatment Approaches by Tumor Type in NF2-related SchwannomatosisDr. Jordan will discuss both local and systemic therapies for the treatment of specific tumors, including published and ongoing research.

Open Q&AAt the end of the day there will be some time to ask other NF2-SWN questions and to share with each other.

PRESENTER BIOS

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. Nicholas Pytel is an assistant professor in the Division of Hematology, Oncology, Transplant, and Cellular Therapy at the University of Wisconsin School of Medicine and Public Health. He co-directs the Pediatric Brain Tumor Program at UW Health and is the medical director of the Pediatric Neuro-Oncology and Pediatric Neurocutaneous Disorders multidisciplinary clinics at UW Health. He also heads the Pediatric Molecular Targeted Radiotherapy Program at UW Health. He is the institutional responsible investigator of neuroscience for UW Carbone Cancer Center in the Children’s Oncology Group. He is involved in the Society of Neuro-Oncology, the International Symposium on Pediatric Neurology-Oncology, and the American Society of Pediatric Hematology/Oncology. He has attended and presented research at these conferences. His research interests involve pediatric central nervous system tumors, targeted therapy, and issues affecting those patients.

JOE BOOE, PEM

Joe Booe serves as a Patient Education Manager (PEM) at Alexion, supporting individuals and families affected by Neurofibromatosis Type 1 with Plexiform Neurofibromas (NF1 PN). In this role, he provides education, resources, and local community connections to help patients better understand and manage their condition.

Joe is passionate about his work, sharing: “Patients living with rare diseases face many challenges that impact their daily lives. I’m inspired by their stories and welcome the opportunity to provide educational resources to help patients effectively manage their condition.”

Through Alexion’s OneSource™ program, Joe connects patients with information about their disease, guidance on treatment, opportunities to engage with others in the rare disease community, and events that provide education and support

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.

ROBERT LISTERNICK, MD

Robert Listernick, MD is a General Academic Pediatrician in the Division of Advanced General Pediatrics and Primary Care. He is a Professor at Northwestern University Feinberg School of Medicine in the Department of Pediatrics. He is director of the Diagnostic and Consultation Service and Co-Director of the Neurofibromatosis Clinic which he cofounded in 1985. He obtained his BA in Biology and English from the University of Rochester and his medical degree from University of Pennsylvania School of Medicine. He performed his residency at The Children’s Memorial Hospital and has been on staff since 1982.His research has focused primarily on optic pathway tumors in children with NF-1.

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.

JORDYN PRELL, MS, CGC

Jordyn Prell joined the Medical College of Wisconsin in June 2020. She obtained her Master of Science degree in Genetic Counseling in May 2020 at Virginia Commonwealth University. She is a board-certified genetic counselor through the American Board of Genetic Counseling. As a pediatric genetic counselor, Jordyn’s clinical focus is serving patients and their families through our Neurofibromatosis/RASopathies Clinic as well as Children Wisconsin’s Multidisciplinary Cleft Lip and Palate team. As an educator, Jordyn strives to create a welcoming and interactive learning environment that allows students to develop personal and professional skills that are necessary to thrive in the field of genetic counseling.

Sponsors

Contact TED for Sponsorship Opportunities!

HOTEL INFO

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.

Please use the link www.nfmidwest.org/2025hotel to make your reservation.

Courtyard by Marriott Naperville1155 Diehl RoadNaperville, IL 60563

FAQ’S

What is the cost of the event?Tickets are $25 for adults and $15 for kids. Your ticket includes a continental breakfast, lunch, and an afternoon snack.

Is financial assistance available?Yes! If you’re traveling from more than 90 miles away, you can use promo code 90MILES to have your registration fee waived. If you need additional help, please contact us at info@nfmidwest.org.

Is there public transportation from the city to the venue?Yes! You can take the Metra to Naperville, and the Pace bus stops near the venue. If you need help getting from the city or from the train station to the event, let us know—we’ll do our best to make special arrangements.

Will there be captioning for people with hearing loss?There will be captioning during the general session which will continue in to the NF2 breakout session. There will not be captioning in the NF1 sessions, unless it is determined that someone needs it.

Is there a hotel nearby?Yes. There are several hotels in the area. We recommend the Courtyard by Marriott Naperville at 1155 Diehl Road. We have a limited number of rooms in a block until October 3rd, for $114, and we will be hosting a Friday night pizza social at this hotel.

Where is the event located?The event will be held at the NIU Building, 1120 E Diehl Rd, Naperville, IL.

Can children attend?Yes! Children ages 5 to 17 are welcome in our supervised kids’ group.

Is there a virtual option?We’re sorry—there are no plans for a virtual option this year.

Will the sessions be recorded?We hope to record the sessions and share them afterward, pending permission from the presenters.

$500 Wednesday Windfall
2025-10-26 18:00 - 2025-11-26 18:00 (America/Chicago)
🎁 Get ready for a little holiday windfall!

On Wednesday, November 26th—just before Thanksgiving, Black Friday, and Cyber Monday—one lucky winner will take home a $500 Visa gift card to help with holiday expenses or a little extra cheer!

Here’s how it works:🎟️ Every donation = raffle entries for the $500 Visa card.❤️ Show your support! When you donate, you can choose a team or fundraiser to receive credit for your gift. It’s a fun way to vote with your dollars and cheer on your favorite family, friend, or team.📣 Spread the word! Fundraisers can earn free entries when they share their page link—and when others (or they themselves) use that link to donate!

It’s simple: Give, share, and you might just win big!Your donation helps people living with neurofibromatosis and schwannomatosis, and you could head into the holidays $500 richer.

Donations are accepted until 6 PM CST on the 26th, and the drawing will run automatically at 6:30 PM CST.

DONATE OR REGISTER A DEDICATEE

Transitioning to Adult Care
2025-10-29 19:00 - 20:00 (America/Chicago)
Joe Booe, Patient Education Manager from Alexion Pharmaceuticals, will share information about transitioning to adult care.

Objectives:

Explain how creating a plan for this change can ease the burden.

Describe the differences between healthcare for children and adults.

Explore how to move from pediatric to adult care.

REGISTER HERE

This is a virtual event.

Navigating Stress and Cultivating Wellness
2025-12-10 19:00 - 20:00 (America/Chicago)
Gina Friesl, Patient Education Manager from Alexion Pharmaceuticals, will share information about Navigating Stress and Cultivating Wellness.

Objectives:

Examines the triggers and symptoms of stress

Explores a variety of techniques for stress management

REGISTER HERE

This is a virtual event.

Young Leadership Program
2026-01-05 00:00 - 2026-01-09 23:59 (Australia/Eucla)
Are you a passionate young adult looking to make a difference? The NF Young Adult Leadership Program is your chance to step up and become a champion for the NF community.

This unique 5-day program is a collaboration between NF Midwest, The Littlest Tumor Foundation, and Texas NF. It is designed to equip young adults with the leadership skills and knowledge needed to advocate for NF research and education on Capitol Hill.

Young adults will have the opportunity to:

Develop critical leadership skills: Learn from experts and gain invaluable mentorship.

Advocate for NF research: Make your voice heard and drive progress in finding a cure.

Educate Congress: Meet with lawmakers and share your story to raise awareness about NF. Engaging workshops on leadership and advocacy Meetings with influential members of Congress Briefings in both the House and Senate Visits to Congressional offices

What to expect:

Engaging workshops on leadership and advocacy

Meetings with influential members of Congress

Briefings in both the House and Senate

Visits to Congressional offices

We’re seeking motivated young adults who are ready to make a positive impact. Join us in creating a brighter future for those affected by neurofibromatosis and schwannomatosis.

The 2026 program will be held on January 5-9, 2026 in Washington, D.C.

Apply today and become part of the next generation of NF leaders! Scholarships are available to qualified applicants.

An Introduction to Managing Plexiform Neurofibromas in NF1
2026-01-13 19:00 - 20:00 (America/Chicago)
Joe Booe, Patient Education Manager from Alexion Pharmaceuticals, will share introductory information about managing plexiform neurofibromas in neurofibromatosis type 1.

At this event, you will learn more about:

Alexion’s support available for NF1 families

NF1 and NF1 PN

Next steps for patients and caregivers

REGISTER HERE

This is a virtual event.
