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NF (Neurofibromatosis) Midwest @nfmidwest.org · 20/05/2026

May 20 is National Clinical Trials Day! From researchers to clinicians, to participants and families, everyone involved plays a vital role in building a better future for NF. Read our blog here: nfmidwest.org/blog/clinical-trial-day/

nfmidwest.org

Why Clinical Trials Matter, and Why They Matter Especially for NF - NF Midwest

Every treatment that exists today: every medication, every therapy, every breakthrough, started somewhere. It started with a question, a hypothesis, and eventually, a clinical trial. May 20 is Nationa...

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 20/01/2026

Big news: A bipartisan, bicameral FY26 Defense spending agreement includes $25M for the Neurofibromatosis Research Program. It’s not final yet—full House, Senate, and President still to go—but this is major momentum thanks to NF advocates.

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 31/12/2025

Happy birthday to NF Midwest! 🎈 Born on this day 44 years ago in 1981. Read a letter from a co-founder and learn how it all began. Proof that taking action can truly make a difference. And happy New Year’s Eve! 🎊 tinyurl.com/NFMidwestBda...

tinyurl.com

Neurofibromatosis Midwest

A Letter From NF Midwest Co-Founder.

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 05/05/2025

It's NF Awareness Month! Read our blog post on what you can do to raise awareness and action this month. Of course, you don't have to stop when May is over! www.nfmidwest.org/blog/may-is-...

nfmidwest.org

Neurofibromatosis Midwest

May is NF Awareness and Action Month % %

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 15/04/2025

Today, NF orgs joined forces to protect research and drive progress for all affected by NF. We're working together to ensure NF is known and funded. The federal funding cuts were tough. But we are more determined than ever. You’ll be hearing more. This is only the beginning. #UnitedForNF #EndNF

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 19/03/2025

Congress has directed the DOD NOT use 2025 CDMRP funding for NF (neurofibromatosis and schwannomatosis) and other conditions including Parkinson's, Lupus, Lung Cancer, Pancreatic, and MORE. Who do you know with contacts in DC or funding to support these losses? email.nfmidwest.org/t/y-77F29DAD...

email.nfmidwest.org

NF UPDATE:Bad News for NF Research. We Will Keep Fighting

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 14/03/2025

This week, NF and other disease advocates worked hard to protect CDMRP funding from a 57% cut. It’s getting noticed, but the fight isn’t over. CDMRP is at risk, and NIH faces funding stoppages & likely more cuts. Stay informed. Stay engaged. Be ready. rollcall.com/2025/03/13/f...

rollcall.com

Fears grow about plan to cut Pentagon medical research fund - Roll Call

The six-month continuing resolution before Congress would cut $1.2 billion from the Pentagon's health research into deadly diseases.

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 09/03/2025

The CR bill they are voting on this Tuesday includes a 57% cut in research funding through the Congressionally Directed Medical Research Program (CDMRP) for NF and may other disorders. Raise your voice, call your Representatives (especially the Republicans) to vote NO.

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 12/02/2025

Springworks Therapeutics has officially received FDA APPROVAL for Gomekli (Mirdametinib)—the FIRST-EVER approved drug to treat plexiform tumors in both ADULTS and CHILDREN with Neurofibromatosis Type 1 (NF1)! Read more about the approval on the press release: tinyurl.com/springworksg...

tinyurl.com

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 11/02/2025

Last Monday and Tuesday, NF Midwest volunteers joined forces with NF orgs to advocate for critical NF research funding in Washington, D.C. Thank you so much to our passionate advocates who play a big role raising awareness and helping to attain this funding. What are some ways you'd like to help?

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NF (Neurofibromatosis) Midwest @nfmidwest.org · 22/01/2025

NF Midwest is happy to be on Bluesky to interact with our community to learn from each other! This poster has two adult children and a husband with NF1. Please share your connection to neurofibromatosis (NF, NF2-SWN or other SWN). #endnf #neurofibromatosis.

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