Neurofibromatosis Midwest

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.

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.

01/20/2026

Good news for people with NF in Montana or Wyoming!

If you have neurofibromatosis (NF1, NF2-SWN, or other forms of SWN) and are looking for care, we have great news! Dr. Matthew Smith-Cohn, a board-certified neurologist and neuro-oncologist, is seeing adults with NF at the Billings Clinic in Billings, Montana, with the possibility of telehealth follow-up in Cody, Wyoming. His team may also see older children.

Clinic website: https://www.billingsclinic.com/care-at-billings-clinic/care-treatment/cancer/cancers-we-treat/brain-cancer/neurofibromatosis-care/

Appointments: 406-238-2500

01/16/2026

We're proud of our collaborative work with the NF Collective. We are seven NF organizations working together to advance work for the NF community.

If you'd like to learn more about the NF Collective, check out Neurofibromatosis Northeast's Tuesday Takeaway this coming Tuesday!

Registration information is in the comments.

Texas Neurofibromatosis Foundation Children's Tumor Foundation Littlest Tumor Foundation Seventeen22 Foundation Neurofibromatosis Northeast The NF Team

01/15/2026

This is very exciting news, and progress from CTF! Thank you for the great work you are doing!

Children's Tumor Foundation

Big, historic day in Brussels! Today, CTF Europe is kicking off a groundbreaking new clinical trial initiative designed to move more NF treatments to patients – faster. We’re launching the EU-PEARL NF1 platform basket trial, which will test multiple therapies in parallel across different NF1 manifestations – and bring new therapies into the trial more quickly, instead of waiting years for separate, one-off trials to open one drug at a time.

This is a historic milestone: Europe’s first platform basket trial for a rare disease. And the blueprint we’ve designed with our partners has implications far beyond NF – more than 7,000 rare diseases could benefit from this kind of trial model.

NF1 isn’t one-size-fits-all – and this trial is built for that reality. It will study multiple NF1 manifestations within one coordinated trial structure, led by:

Plexiform neurofibromas (PN): Jaishri Blakeley + Ignacio Blanco

Cutaneous neurofibromas (cNF): Pierre Wolkenstein + Laura Fertitta

Low-grade gliomas / optic pathway gliomas (LGG/OPG): Darren Hargrave + Astrid Marie Sehested

Biostatistics: Guenter Heiman

This European launch builds on the master protocol and trial strategy CTF developed through EU-PEARL - EU Patient- cEntric clinicAl tRial pLatforms (a European public-private partnership supported by Innovative Health Initiative (IHI) / IMI ) – and on what we’ve learned through INTUITT-NF2 in the U.S., where this same trial model is accelerating therapies for NF2-related schwannomatosis. CTF identified brigatinib and brought it into INTUITT – and the trial is showing tumor shrinkage in NF2 patients.

A special note of gratitude: CTF Europe presented Guenter Heiman with our Cloud Carrier Award for his incredibly strong support in the development of this NF1 platform basket trial.

Thank you to EFPIA - European Federation of Pharmaceutical Industries and Associations for hosting today’s convening in Brussels.

Next: first patient recruitment later this year – watch this space for updates!

Annette Bakker Simone Manso Dariusz Adamczewski Marco Nievo Christina Economides

01/13/2026

Today is the day! Join NF Midwest and Alexion PEM Joe Booe for a webinar, "discovering possibilities for neurofibromatosis type 1 (NF1) plexiform neurofibromas in adults" at 7pm CST. You don't want to miss this!

Registration and more info in link.

https://www.nfmidwest.org/event/an-introduction-to-managing-plexiform-neurofibromas-in-nf1/

01/12/2026

Researchers at Massachusetts General Hospital are in the final stretch of an important study. They are looking for adults with NF1 and parents of children with NF1 who do not receive care through an NF Clinic Network to take part. Participation is easy, and your voice can help improve care for the NF community.

Learn more on our blog in the comments.

01/11/2026

Are you watching the Bears vs. Packers game tonight, or just chilling this weekend...or is your weekend filled?

Whatever it may be, if you have NF (any type), or are a care partner to someone with NF, we REALLY NEED you find a few minutes to complete this survey if you haven't done so already.

The survey is closing on Monday and your input and experience is needed!

[Navigating NF Survey – Fill out form] https://forms.office.com/r/sJFaM4pmph

01/10/2026

Our final Young Leader program update—from Friday

The NF Young Adult Leaders’ D.C. week ended on a high note with a Congressional Briefing on NF. Huge thanks to the expert panelists who shared advances in NF research, and to the members of Congress and their staff who showed up to listen and engage.

Patients, including some of our young leaders and mentors, shared their personal experiences of living with NF, bringing urgency and meaning to the conversation.

It was a full and inspiring week, and we are incredibly proud of our Midwest community. Thank you to Kevin, Amy, Hunter, Sophia, and Valencia—our new NF Midwest Young Leaders—and to mentors Elise and Tyler for representing NF Midwest with heart and leadership. No One Fights Alone.

01/09/2026

UPDATE: This virtual event is now called "Discovering possibilities for neurofibromatosis type 1 (NF1) plexiform neurofibromas in adults."

Don't forget to join NF Midwest and Alexion PEM Joe Booe for a webinar, Introduction to Managing Plexiform Neurofibromas in NF1, on Tuesday, January 13 at 7pm CST.

https://www.nfmidwest.org/event/an-introduction-to-managing-plexiform-neurofibromas-in-nf1/

01/09/2026

An update from Thursday — Our NF Young Leaders kept the momentum going.

Yesterday and today, our NF Young Leaders were busy meeting with members of Congress and their staff, while also delivering invitations for tomorrow’s Congressional Briefing.

A special thank-you to leaders from NF Midwest's region who took time out of their busy schedules to meet with our young adults, including Senator Tammy Baldwin (WI), who generously met with the full group, and Representative Jan Schakowsky(IL), who met with several of our leaders. We’re also grateful to Representative Mike Quigley(IL) for meeting with Kevin, one of our young leaders, and his constituent.

Tomorrow, the week wraps up with a Congressional Briefing on NF, featuring experts and individuals living with NF sharing their knowledge and lived experiences.

Texas Neurofibromatosis Foundation Littlest Tumor Foundation

01/08/2026

NF Midwest is excited to share that we are now a member of the Global Genes Advocacy Alliance—a worldwide community of more than 820 nonprofit organizations and support groups committed to changing the way the world tackles rare disease. Through this alliance, we’ll connect with partners who are building awareness, advancing research, and expanding support for individuals and families facing rare conditions. This collaboration strengthens our ability to advocate, learn, and participate in a network working toward treatments, cures, and meaningful improvements in care for the NF community.