$500 Wednesday Windfall
2025-10-26 18:00 - 2025-11-26 18:00 (America/Chicago) | IN
🎁 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) | IN
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) | IN
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) | IN
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.

Discovering possibilities for neurofibromatosis type 1 (NF1) plexiform neurofibromas in adults.
2026-01-13 19:00 - 20:00 (America/Chicago) | IN
Joe Booe, Patient Education Manager from Alexion Pharmaceuticals, will share discovering possibilities for neurofibromatosis type 1 (NF1) plexiform neurofibromas in adults..

At this event, you will learn more about:

Alexion’s support available for NF1 families

NF1 and NF1 PN, especially in adults

Next steps for patients and caregivers

REGISTER HERE

This is a virtual event.

Neurofibromatosis Type 1 (NF1) Plexiform Neurofibromas in Adults: A Closer Look at Koselugo (selumetinib)
2026-02-17 19:00 - 20:00 (America/Chicago) | IN
Join us as Dr. Jacob Henderson presents a more in-depth look at Koselugo for the treatment of plexiform tumors in neurofibromatosis type 1. Dr. Henderson is a specialist in pediatric hematology-oncology at Mary Bridge Children’s Hospital in Fox Island, WA.

At this event, you will learn more about:

Next steps for patients and caregivers

NF1 and NF1 PN, especially in adults

Alexion’s support available for NF1 families

REGISTER HERE

This is a virtual event.

Lexington, KY - Community Conversation
2026-03-14 08:30 - 13:00 (America/Chicago) | Shriner Children’s Hospital, 110 Transcript Ave, Lexington, KY, 40508
Listen and learn together, with experts and each other.

The morning will include:

Continental breakfast and lunch

An ask me anything Q&A

Short educational session

Time to socialize and meet others

Professionals attending the event include:

Dr. Donita Lightner, MD – Pediatric Neuro-oncologist

Dr. Michael Hendricks, MD – Pediatric Neurologist

Kim Osborne – Patient Services

Alyssa Frye, PsyD – Clinical Psychologist, UKY

Catherine Garcia Stangherlin, MD – Adult Neurologist/Neuro-oncologist

Register

Join us for a morning of learning and sharing at Shriners Children’s Hospital in Lexington, KY, on Saturday, March 14th. Experts from the University of Kentucky, including the team at the NF clinic there will be in had to share their professional knowledge. Equally important, we will share experiences with each other.

There will be some educational sessions, material to take home, awareness merchandise, and an Ask Me Anything Q&A. The morning will also include a continental breakfast and end with lunch.

Professionals Attending Include: Dr. Donita Lightner, MD – Pediatric Neuro-Oncologist; Dr. Michael Hendricks, MD – Pediatric Neurologist; Kim Osborne – Patient Services; Alyssa Frye, PsyD – Clinical Psychologist, UKY; Catherine Garcia Stangherlin, MD – Adult Neurologist / Neuro-Oncologist.

Thank You to our Sponsors

NF1 Peer Conversations
2026-03-24 19:00 - 20:00 (America/Chicago) | IN
Join other adults living with NF1 for NF1 Peer Conversations—an online, supportive space to connect, share experiences, and talk openly about life with NF1. Some conversations will focus on specific topics or feature an expert guest, while always leaving time for open discussion and questions. These conversations are currently held on the fourth Tuesday of each month. Visit our Events page for additional NF1 Peer conversations and updated dates.

Registration

NF Parent Conversations
2026-04-13 19:00 - 20:00 (America/Chicago) | IN
Join our Parent Community Conversations—a welcoming online space for parents and caregivers affected by NF to connect with others who understand. Some conversations may be predetermined around a specific topic, while others offer open discussion and shared support. These conversations are currently held on the second Monday of each month. Visit our Events page for additional parent conversations and updated dates. We invite people with any type of NF to attend.

Registration

2026 Walk4NF Madison, WI
2026-05-09 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 44 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.

2026 Walk4NF Indianapolis, IN
2026-05-16 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 44 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.

2026 Walk4NF Columbia, MO
2026-05-30 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 44 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.

2026 Walk4NF Naperville, IL
2026-06-06 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 24th Naperville Walk4NF – the grandaddy of them all supporting those affected by neurofibromatosis!
Plus, NF Midwest is celebrating over 44 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.

Brainy Ridge Camp NF
2026-07-19 08:00 - 2026-07-25 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 available

More Information and Registration
