2024 Walk4NF Virtual Challenge
2024-01-01 00:00 - 2024-09-30 00:00 (America/Chicago) | Wherever you live! Whenever you want until Sept. 30, 2024
Walk4NF Virtual Challenge Details
Get ready for this year’s Virtual Challenge!
Plus, NF Midwest is celebrating over 42 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Virtual Challenge as soon as possible.
(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.
(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!!

NF1 PN Educational Event/Living With NF1 PN: How to Be Your Child's Advocate.
2024-03-28 19:00 - 20:00 (America/Chicago)
Gain a new perspective on caring for a child with NF1 PN from this presentation by Regina Zambrano, MD. Learn about NF1 PN, the importance of PN monitoring, and how to build your NF1 PN team.

For more information

Virtual Open Office Hours
2024-04-10 12:30 - 13:30, 2024-04-24 12:30 - 13:30 (America/Chicago)
Looking for a friendly face and a listening ear? Do you have questions about neurofibromatosis, but aren’t sure where to turn? NF Midwest is here for you! We’re excited to offer virtual open office hours, a chance to connect directly with one of our staff in a welcoming online environment.

During these virtual office hours, you can:

Get moral support: Navigating NF can be challenging. Our staff is here to offer encouragement and support.

Find resources: Need help locating resources or a physician we will help to point you in the right direction.

Much more: Dealing with a situation or have a question and not sure where to start? We may not have the answer to everything, but we might be able to connect you to someone who does.

Others may also be in the Zoom chat. If you would like a private meeting, please reach out to Sarah.

2024 Walk4NF Columbia, MO
2024-04-20 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!
Plus, NF Midwest is celebrating over 42 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!!

NF Midwest Parent Group Chat
2024-04-25 18:30 - 19:30 (America/Chicago)
Designed for parents with a child of any age with NF, this virtual chat provides a dedicated space for sharing insights and connecting with others who comprehend the unique joys and concerns of having a child with neurofibromatosis.

NF Awareness Event
2024-05-01 18:00 - 20:00 (America/Chicago) | Harp and Fiddle, 110 Main Street, Park Ridge, Illinois, 60068
Join NF Midwest and Children’s Tumor Foundation for appetizers and wonderful conversation to celebrate the kickoff to NF Awareness month. Click here to register.

NF1 PN Educational Event/Living With NF1 PN: How to Be Your Child's Advocate.
2024-05-02 18:00 - 19:00 (America/Chicago)
Gain a new perspective on caring for a child with NF1 PN from this presentation. Learn more about NF1 PN, the importance of PN monitoring and how to build your NF1 PN team.

For more information

NF1 PN Educational Event/All about NF1, PN, and a treatment option.
2024-05-09 18:00 - 19:00 (America/Chicago)
Learn about Koselugo and the results seen in children with NF1 PN. Gain access to support programs to help you and your family in your journey.

For more information

2024 Walk4NF Madison, WI
2024-05-11 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!
Plus, NF Midwest is celebrating over 42 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!!

2024 Walk4NF Indianapolis, IN
2024-05-18 09:00 - 13:00 (America/Chicago) | White River State Park, 801 W Washington Street, Indianapolis, IN, 46204, United States
Walk4NF Indianapolis Details
Get ready for the annual Indianapolis Walk4NF!
Plus, NF Midwest is celebrating over 42 years as a chartered non-profit!
(1) Register and learn much more at Walk4NF Indianapolis 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 located on the event page 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!!

2025 Walk4NF Indianapolis, IN
2024-05-18 09:00 - 13:00 (America/Chicago) | White River State Park, 801 W Washington Street, Indianapolis, IN, 46204, United States
Walk4NF Indianapolis Details
Get ready for the annual Indianapolis 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 Indianapolis 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.

NF1 PN Educational Event/An introduction to managing NF1 PN Educational Event/
2024-05-21 19:00 - 20:00 (America/Chicago)
Get the basics of treating NF1 PN from an Alexion Patient Education Manager. Hear about support options available to you and your family.

For more information

Monthly NF Midwest Parent Group Chat
2024-05-23 18:30 - 19:30 (America/Chicago)
Designed for parents with a child of any age with NF, this virtual chat provides a dedicated space for sharing insights and connecting with others who comprehend the unique joys and concerns of having a child with neurofibromatosis.

Please Note: Due to registration numbers and staff availability, meeting times and dates may occasionally be subject to change. We will do our best to provide advanced notice of any adjustments.

2024 Walk4NF Naperville, IL
2024-06-08 08:30 - 13:00 (America/Chicago) | Naperville Riverwalk, 912 Honorary Sindt Memorial Ct, Naperville, IL, 60540, United States
Walk4NF Naperville Details
Get ready for the 23rd Naperville Walk4NF-the largest walk and party in the park for NF in the country!
Plus, NF Midwest is celebrating over 42 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!!

Brainy Ridge Camp NF
2024-07-21 08:00 - 2024-07-27 17:00 (America/Chicago) | Blue Ridge School, St. George, Virginia, United States
A 7 day, 6 night residential summer camp for children and teens living with Neurofibromatosis Type 1, Type 2 and Schwannomatosis. Medical staff, including physicians, nurses, social workers, and psychologists are on-site 24 hours a day. At Brainy Ridge, children and teens have the opportunity to learn from peers and mentors and gain a better understanding of NF, individual strengths and self-worth.

*Scholarships availableFor more information, please contact Sarah at outreach@nfmidwest.org

NF1 PN Educational Virtual Event-Care Givers Need Care, Too
2024-08-01 18:00 (America/Chicago)
Care givers need care, too. At this event attendees will gain a new perspective on caring for a child with NF1 PN and learn how to build your NF1 ON team. Presentation by Regina Zambrano, MD.

NF Patient Education Symposium at the University of Kentucky
2024-08-03 09:00 - 14:00 (America/Kentucky/Louisville) | Clarion Hotel Conference Center, 1950 Newtown Pike, Lexington, Kentucky, 40511, United States
Join us for an informative symposium specifically designed for neurofibromatosis patients and their families. A breakfast buffet will be provided.

Speakers:Dr. Donita Lightner – Neurology- Oncology, University of KentuckyDr. Micheal Hendricks – Neurology, University of Kentucky

Please RSVP to Kim Osborne at kimosborne@uky.edu or (859) 218-5011

2024 North Shore Century Ride
2024-09-15 00:00 - 23:59 (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 2nd). 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. At checkout use use the discountcode CTFNSC to receive a 10%discount

Select Registration type(Adult or Child)

Enter all registration details

PDF WITH MORE INFO TO PRINT AND SHARE

Champions of the Fall
2024-10-01 08:00 - 2024-12-31 18:00 (America/Chicago)
START YOUR CREW OR JOIN ONE TODAY!

Three Months. One Champion. Rally Your Crew!

NF Midwest has a new fall fundraising and awareness campaign kicking off on October 1st called Champions of the Fall (COTF). The goal is to raise funds and awareness from October 1st through December 31st. Anyone can participate. Individuals or teams create their events and/or participate in opportunities provided by NF Midwest.

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 December 31st, so plenty of time to make a BIG impact.

Join the Fun & Fundraise: Throughout the campaign, NF Midwest will host exciting events like an October raffle, Five Bucks Fridays in November, Giving Tuesday, and a Holiday Surprise! 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 organize an Ugly Holiday Sweater contest. You can 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 2025, your COTF can be transferred directly 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.

START YOUR CREW OR JOIN ONE TODAY!

Caregivers Need Care, Too
2024-10-16 19:00 - 21:00 (America/Chicago)
Free Educational Event

At Maggiano’s Little Italy240 Oakbrook CenterOak Brook, Illinois 60523

Managing NF1 PN can be complex!

At Alexion, we know that support matters. Hear from a healthcareprofessional and Patient Education Manager to learn more aboutneurofibromatosis type 1 with plexiform neurofibromas (NF1 PN).

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.

Please RSVP for this event at koselogo.com/events.

PDF FLYER

RSVP

2024 iNFo Fair
2024-10-26 08:00 - 16:00 (America/Chicago)
REGISTRATION AND DONATION PAGE

This Year’s Focus Will Be On Research!

Join us for an all-day iNFo Fair in Naperville, Illinois, on Saturday, October 26th. Don’t miss this unique opportunity to learn about past, present, and future research projects. It’s also a great chance to connect with others, which is essential for building support.

Co-Chaired by Miriam Bornhorst, MD of Lurie Children’s Hospital and Vanessa Merker, PhD of Massachusetts General Hospital.

LOCATION:

Northern Illinois University – Naperville Campus1120 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 4:30 pm CST

COST:

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

TOPICS/SESSIONS

FINAL SCHEDULE/AGENDA

GENERAL TOPICS
Pathway to Treatment Approval – Presented by Andrea Gross, MDLearn about the complex process of getting a treatment approved. Discover how many researchers, clinicians, and patients are involved, as well as the funding challenges and hurdles of FDA approval. This presentation will help you understand why research and new treatments take so long, begin to see the hope of NF research, and recognize what we can do to help the process.

TYPES OF RESEARCHThroughout two presentations, we will explore different types of research, their roles in advancing Neurofibromatosis (NF) care, and how they contribute to improving patient outcomes. Learn about the significance of each type of research and discover ways to participate in and support these vital efforts. These sessions are ideal for anyone interested in understanding the impact of research on NF care.

Interventional Research – Presented by Miriam Bornhorst, MD

Non-Interventional Research – Presented by Vanessa Merker, PhD

How Research is Funded – Presented by Sarah Lees, CTF

Panel DiscussionHear from patients and parents who have participated in research in different ways. Share obstacles and concerns.

Understanding Gene Therapy – Presented by Miranda McManus

NF1 BREAKOUT AND RESEARCH UPDATES
Topics Subject to Change

NF1 Clinical Trials – Dr. Bornhorst

The Use of Biomarkers in NF1 – Dr. Garzon

NF Genetics Cohort: the Clinical, Genomic and Photographic Registry for Neurofibromas in NF1 – Dr. SarinMore updates being added soon

NF2-SWN AND SWN BREAKOUT AND RESEARCH UPDATES
Topics Subject to Change

NF2-Related Schwannomatosis and Schwannomatosis Trials – Past, Present, and Future Research in NF

INTUITT-NF2 Study – Innovative trial for understanding the impact of targeted treatments in NF2-Related Schwannomatosis

STARFISH Study – Screening trial for pain relief in schwannomatosis

Drug Repurposing in NF2-SWN – Use of medications used in other medical conditions to treat NF2-related complications

PRESENTER BIOS

MIRIAM BORNHORST, MD – iNFo Fair Co-Chair

Dr. Bornhorst is a pediatric neuro-oncologist at Lurie Children’s Hospital (LCH), principal investigator in the Stanley Manne Children’s Research Institute, Max Lacewell Endowed Brain Tumor Research Scholar, and an Associate Professor in Pediatrics at Northwestern University, Chicago, IL. Her research interest and experience are in the discovery of tumor biomarkers that predict tumor behavior, including response to treatment. She has an active, funded research project looking at baseline metabolism in NF1, and how to leverage changes in metabolism to prevent/treat plexiform neurofibromas. She also has an active project researching SV patterns within tumors associated with risk for progression/decreased treatment response. In her role as a neuro-oncologist, she has extensive experience with the clinical care of children with brain tumors, Neurofibromatosis Type 1, and Cancer Predisposition, including clinical trial development and execution.

VANESSA MERKER, PhD – iNFo Fair Co-Chair

Vanessa L. Merker, PhD, is a health services researcher at Massachusetts General Hospital and an Assistant Professor in Neurology at Harvard Medical School. Her research program leverages information collected directly from patients and their family members to improve clinical trial design and healthcare delivery for rare, genetic diseases like neurofibromatosis and schwannomatosis. She seeks to highlight patients’ priorities and tailor clinical interventions to match their preferences by using research methods such as in-depth qualitative interviews and patient-reported outcome measures.

Dr. Merker is also committed to partnering with NF families to help design and disseminate research. As Chair of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REINS) International Collaboration Patient Representative working group, she helps enable NF patients/caregivers to give feedback on the design of new research studies.

ANDREA GROSS, MD

Dr. Gross is a pediatric oncologist and researcher at the National Institutes of Health National Cancer Institute (NIH/NCI). She is a prominent researcher and clinician with a focus on neurofibromatosis type 1 (NF1). Her areas of interest include developing and utilizing functional outcome measures for tumor predisposition syndromes, working with rare disease patient advocates to increase patient engagement in clinical trial design, and dealing with the challenge of medication adherence in the NF1 population.

MATTHIAS KARAJANNIS, MD, MS

Dr. Karajannis has been serving as Chief of the Pediatric Neuro-Oncology Service at Memorial Sloan Kettering Cancer Center since 2017 and is a Professor of Pediatrics at Weill-Cornell Medical College. Previously, he directed the Pediatric Hematology/Oncology Fellowship Training Program at NYU Langone Medical Center. He received his MD from the Free University Berlin, Germany, completed residency training at Duke University Medical Center, and fellowships in pediatric hematology/oncology, as well as pediatric neuro-oncology, at Memorial Sloan-Kettering Cancer Center. His clinical and translational research aims at developing novel diagnostic tools and therapies for patients with nervous system tumors. Dr. Karajannis currently serves as Study Chair on clinical trials conducted by the Pedatric Brain Tumor Consortium, the NF Clinical Trials Consortium and the Children’s Oncology Group.

SARAH LEES, MS, MEd, MHA

Sarah Lees, MS, MEd, MHA serves as the Director of Research Education and Engagement, including co-planning the Global NF Conference, for Children’s Tumor Foundation. Prior to her time with CTF, Sarah has over a decade of experience in healthcare innovation, process improvement, brand building, and education. She also worked as a Senior Scientist in a Biomedical Engineering lab at Georgia Tech, with a focus on wound healing, inflammation, and scar formation, and as a secondary science educator. She holds advanced degrees in molecular genetics, education, and healthcare administration.

MIRANDA MCMANUS, MS

Miranda McManus, MS, a parent to a son with NF1, her inspiration and hero. Miranda is also part of the Biology faculty at the College of Charleston, in Charleston, SC, and has a background in molecular genetics. She is a member of the REiNS Gene Therapy working group and serves on the REiNS Director’s Council.

JENNY GARZON, MD (replacing Dr. Carlos Prada)

Dr. Garzon is a Postdoctoral Fellow working with Dr. Carlos Prada at Lurie Children’s Hospital. Her current research focuses on identifying novel blood biomarkers in Neurofibromatosis Type 1 patients and plexiform neurofibromas.

KAVITA SARIN, MD PhD

Kavita Sarin, M.D./Ph.D., is an Associate Professor of Dermatology and is the Director of the Stanford Skin Cancer Genetics Program at the Stanford Cancer Institute. She has an academic interest in Precision Medicine, focused on the integration of genetic and clinical patient data to inform susceptibility, prognosis, and treatments in skin cancer and other rare dermatologic disorders. Her lab applies cutting-edge sequencing and imaging technologies to better understand skin cancer and rare immunologic skin diseases. She sees patients in medical dermatology at Portola Valley and the Stanford Cancer Institute.

Sponsors

Contact TED for Sponsorship Opportunities!

HOTEL INFO

A small block of rooms has been reserved at the Naperville Holiday Inn Express for $119 per night. Rooms must be reserved before the number of blocked rooms runs out and by October 9th 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/2024hotel to make your reservation.

Holiday Inn Express1837 Centre Point CircleNaperville, IL 60563

Windfall Wednesday
2024-11-05 08:00 - 2024-11-27 18:00 (America/Chicago)
You’ll be spending money on Black Friday, Cyber Monday, Giving Tuesday, and throughout the season of gift-giving. Now is your chance to get money to help you through the holidays while also supporting a great cause and your favorite NF family or team in their Champion of the Fall efforts.

Make a donation and earn entries to win up to $500 in Visa gift cards. TWO $250 cards will be awarded on Windfall Wednesday, November 27th at 6 pm CST (Winners will be notified immediately by email.

When you make your donation, choose any team listed. Each of these teams is participating in Champions of the Fall. As part of their efforts, they will be using Windfall Wednesday, Giving Tuesday, end-of-year giving, and any special events or creative ideas they come up with to raise funds and ensure that those with NF Never Fight Alone.

More Info$50 raisedDonate

Meet Camp NF
2025-01-28 18:00 - 19:00 (America/Chicago)
Learn more about Camp NF (formerly Camp New Friends) at an online meeting on Tuesday, January 28th. Camp NF is a week-long camp for kids with NF, held in the beautiful Blue Ridge Mountains of Virginia. It is hosted by Camp Brainy Ridge and directed by the same dedicated team that has run Camp New Friends since 2004. This year, the camp will take place from July 13 to July 19.

Register now (so you don’t forget) at nfmidwest.org/meetcampnf

If you’re concerned about affordability, don’t let that stop you from giving your child this incredible experience. NF Midwest provides funding to help kids from our service area attend (applications are submitted through the camp).

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.
