Posted By NF Midwest | On December 30th, 2025 The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) Collaborative is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2-related schwannomatosis, and schwannomatosis. In 2011, a team of neurofibromatosis clinicians and researchers formed a working group called Response…
Read MoreA Big Win for NF1-PN Patients in Europe
The European Commission has granted conditional approval for EZMEKLY® (mirdametinib) to treat symptomatic, inoperable plexiform neurofibromas (PNs) in patients aged 2 and up with NF1. This makes it the first therapy in the EU approved for both adults and children. Why it matters Safety & Access Common side effects include skin rash, diarrhea, nausea, and…
Read MoreThe Loss of an NF Legend: Dr. Vincent Riccardi
We are deeply saddened by the passing of Dr. Vincent “Vic” Riccardi, a pioneering expert in neurofibromatosis (NF) research and a founder of the Texas Neurofibromatosis Foundation. Our heartfelt condolences go out to his family, friends, and colleagues. Dr. Riccardi’s contributions over a career of more than 40 years were groundbreaking. He wrote many important…
Read MoreGreat News! $25 Million Secured for Neurofibromatosis Research in FY 2024
There’s fantastic news for the fight against neurofibromatosis (NF) and schwannomatosis (SWN)! The recent spending bill allocates $25 million specifically for the Neurofibromatosis Research Program (NFRP) in Fiscal Year (FY) 2024. This vital funding is a testament to the tireless efforts of NF Midwest and other advocacy organizations, and volunteers. The NFRP funding complements research…
Read MoreSpring 2023 NF Midwest Newsletter
Check out our Spring 2023 NF Midwest Newsletter! The highlights of this issue include… Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Back Page
Read More$25 Million for NF & SWN!
$25 million has been allocated specifically for the Neurofibromatosis Research Program (NFRP) in the Fiscal Year 2023 Omnibus appropriates bill that was passed by the House, December 23rd! It only awaits the President’s signature to be final. That’s $5 million more than last year!! Every year NF Midwest and other NF organizations and volunteer advocates…
Read More2021 NF1 Diagnostic Criteria Update and Comparison of Changes
An update of the diagnostic criteria for neurofibromatosis type 1 has been published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics. This is an update to the original diagnostic criteria that was established at the National Institutes of Health (NIH) in 1987. The new criteria are the…
Read More20 Million Secured for NF Research!
We did it! We’re pleased to announce that $20 million in federal funding has been secured for the Neurofibromatosis Research Program through the Congressionally Directed Medical Research Program (CDMRP-NFRP) for Fiscal Year 2021. The House and Senate just passed Fiscal year 2021 spending bills including this funding that are now on their way to the…
Read MoreBIG NEWS: Drug up for FDA Approval for NF1 Plexiforms
Big news just hit…though it has been expected! Many of us have been following the success of the drug selumetinib in treating people with neurofibromatosis and plexiform tumors and it was just announced that AstraZeneca and Merck & Co., Inc. has now applied to the US Food and Drug Administration (FDA) for approval of the…
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