Neurofibromatosis Midwest

Neurofibromatosis Midwest Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on th

Hear what this year’s Young Leaders from NF Midwest’s region took away from their experience in the Young Leadership Pro...
02/09/2026

Hear what this year’s Young Leaders from NF Midwest’s region took away from their experience in the Young Leadership Program. These young adults leave with new skills, deeper confidence, and friendships that last well beyond the program.

Blog link in comments.

This February, we honor everyone living with a rare disease—and the families, caregivers, and advocates who stand with t...
02/05/2026

This February, we honor everyone living with a rare disease—and the families, caregivers, and advocates who stand with them. 💚

NF Midwest is proud to be part of this community!

Let’s show our spots for NF and keep pushing for better care, research, and understanding.

Donate or learn more: www.nfmidwest.org/give

Thanks to your advocacy efforts, we are pleased to announce that $25 million in federal funding has been SECURED for the...
02/03/2026

Thanks to your advocacy efforts, we are pleased to announce that $25 million in federal funding has been SECURED for the Neurofibromatosis Research Program (NFRP) through the Congressionally Directed Medical Research Programs (CDMRP) for Fiscal Year (FY) 2026.

Both the House and the Senate have passed the legislation that includes the Defense spending bill and the President is expected to sign the legislation soon.

THANK YOU for your continued loyalty to the NF Network Advocacy Program.

Together, we helped secure vital federal research funding—accelerating the search for treatments and a cure. We celebrate this victory with you. We did it!

We are deeply grateful for this community’s continued commitment and are excited to carry this important advocacy work forward into Fiscal Year 2027.

Walk4NF is back for 2026! 💙💚Across the Midwest, families, friends, coworkers, and communities are coming together to sup...
02/03/2026

Walk4NF is back for 2026! 💙💚

Across the Midwest, families, friends, coworkers, and communities are coming together to support everyone impacted by neurofibromatosis—and it all starts with YOU.

🎯 Our 2026 Goal: Raise $165,000 to fund NF research, support 2,000+ families, and expand clinic access.

🚶‍♀️ 2026 Walk Dates & Locations
📍 Madison, WI – May 9
📍 Indianapolis, IN – May 16
📍 Columbia, MO – May 30
📍 Naperville, IL – June 6

👟 Teams are the heart of Walk4NF—families, friends, workplaces, clubs, and classrooms all welcome!

Last year, 600+ walkers raised $150,000+. Let’s go even bigger in 2026.

👉 Sign up today at www.walk4nf.org
Together, let’s show that no one fights alone.

Join NF Midwest and Alexion for a webinar on Neurofibromatosis Type 1 (NF1) Plexiform Neurofibromas in Adults: A Closer ...
01/30/2026

Join NF Midwest and Alexion for a webinar on Neurofibromatosis Type 1 (NF1) Plexiform Neurofibromas in Adults: A Closer Look at Koselugo (selumetinib).

This webinar will be presented by Dr. Henderson, a specialist in pediatric hematology-oncology.

Learn more and register via the link in the comments.

Caregivers are invited to join a fully remote research study led by the National Cancer Institute.This study is evaluati...
01/27/2026

Caregivers are invited to join a fully remote research study led by the National Cancer Institute.

This study is evaluating Acceptance and Commitment Training (ACT), a skills-based approach shown to help parents of individuals with certain chronic conditions. Participation includes 4 virtual sessions over 8 weeks.

The study is open to caregivers of all backgrounds, requires no travel, and compensation is provided.

More details and eligibility info are in the comments.

Because of you, five young leaders from our NF Midwest community traveled to Washington, D.C., to advocate for people li...
01/26/2026

Because of you, five young leaders from our NF Midwest community traveled to Washington, D.C., to advocate for people living with neurofibromatosis.

Their voices were heard on Capitol Hill, and it mattered. Read the full story and advocacy update in our latest email (link in comments).

We have good news to share below about 2026, but we’re already looking ahead to 2027 funding. No one fights alone, and w...
01/20/2026

We have good news to share below about 2026, but we’re already looking ahead to 2027 funding. No one fights alone, and we need your personal letters to keep this momentum going. Link in the comments!

HERE'S THE GOOD NEWS!

January 20, 2026 — The Senate and House of Representatives Committee on Appropriations has released the final negotiated agreement for the Fiscal Year 2026 Defense spending bill – and we are pleased to report that it includes $25 million in funding for the Neurofibromatosis Research Program (NFRP) through the Congressionally Directed Medical Research Program (CDMRP). This bicameral, bipartisan agreement represents a major victory for the NF community.

We’re not across the finish line yet. The package containing the Defense bill still must pass the full House, which will be voted on tomorrow (Wednesday). It also must be passed by the Senate and then signed by the President before becoming law. But today, we’re grateful for this momentum and for every advocate who helped make it possible.

After NF research funding was unexpectedly cut in Fiscal Year 2025, this is a hard-earned step forward. The agreement announced today is a direct result of this community’s efforts.

We’ll keep you updated as the process continues. Thank you for your continuing efforts and for standing with us every step of the way.

Reminder! We need your letters for Washington, D.C. It is so important that your Senators and Representatives hear perso...
01/20/2026

Reminder! We need your letters for Washington, D.C. It is so important that your Senators and Representatives hear personal NF stories. You have no idea how impactful your words can be as we head to Capitol Hill to advocate for NF research funding.

Sharing your story truly makes a difference, and we have made the process simple. Check out our blog (see comments) to learn how to submit your letter and be part of this important advocacy effort.

Address

473 Dunham Road, Ste 3
Saint Charles, IL
60174

Telephone

+16309453562

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