NF (Neurofibromatosis) Midwest

Neurofibromatosis Midwest NF1 Treatment News: FDA Expands Selumetinib (KOSELUGO) Approval to Adults  % %

FDA expands approval of Koselugo (selumetinib) to adults with symptomatic NF1 PNs.

www.nfmidwest.org/nf1-treatmen...

#neurofibromatosis #NF1

FDA approves selumetinib for pediatric patients 1 year of age and olde On September 10, 2025, the Food and Drug Administration approved selumetinib (KOSELUGO, AstraZeneca Pharmaceuticals LP) granules and capsules for pediatric pati

FDA expands approval of Koselugo (selumetinib) — now approved in granule form and for pediatric patients with NF1 ages 1+!

www.fda.gov/drugs/resour...

Neurofibromatosis Midwest May is NF Awareness and Action Month % %

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-...

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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

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...

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.

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...

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.

2024 Neurofibromatosis iNFo Fair hosted by NF Midwest - YouTube This playlist includes presentations form the 2024 iNFo Fair hosted by Neurofibromastosis Midwest (NF Midwest). The focus of this iNFo Fair was research. All...

Our 2024 iNFo Fair videos are available to view, with hopefully more videos to come. Watch them here, share, and tell us what you think!

youtube.com/playlist?lis...

#neurofibromatosis #schwannomatosis

Clinical Trials for Treating Pain in Schwannomatosis Join us to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis.  We’ll...

Join us February 25th to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis.
www.nfmidwest.org/event/clinic...

#endnf #schwannomatosis

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...

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?

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.

Good question!