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.
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...
FDA expands approval of Koselugo (selumetinib) to adults with symptomatic NF1 PNs.
www.nfmidwest.org/nf1-treatmen...
#neurofibromatosis #NF1
FDA expands approval of Koselugo (selumetinib) — now approved in granule form and for pediatric patients with NF1 ages 1+!
www.fda.gov/drugs/resour...
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-...
Nice!
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...
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.
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
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!