Recordings from the 2024 iNFo Fair are now posted on NF Midwest’s YouTube channel youtube.com/@nfmidwest. There may still be more recordings to come later, as we get permission from presenters. The 2024 iNFo Fair was focused on research. Once again we would like to thank our presenters for taking the time to be with us, and…
Read MoreThe Champion of the Fall Announced
NF Midwest recently concluded its 2024 Champions of the Fall fundraising campaign, a dedicated effort to support individuals affected by neurofibromatosis (NF). The campaign, which ran from October 1st through December 31st, successfully raised over $5,970 thanks to the unwavering commitment of numerous teams and individuals. *Drumroll* And our 2024 Champion of the Fall is………
Read MoreNF Midwest December Update
Check out NF Midwest’s December update. If you are connected with us, you should have received this in an email! If not, use one of our contact forms to connect with us. The highlights of this update are various new and existing research studies looking for participants. These can range from simple surveys to a long study…
Read MoreMy NF Guide Study
You can make a difference in improving care for people with NF1. If you or your child has NF1 and haven’t visited an NF Clinic Network Clinic (NFCN) in the last twelve months, you may be eligible to participate in this important research study. The goal is to enhance the care that people with NF1…
Read MoreBen’s Trip to Camp
Each year NF Midwest provides the opportunity for families to apply for scholarships for their son or daughter to attend a summer camp experience specifically for youth affected by NF. We want to highlight one youth’s experience this year at Camp Brainy Ridge Camp NF located in St. George, Virginia. We asked Ben and his…
Read MoreFDA Grants Priority Review for Mirdametinib for the Treatment of Adults and Children with NF1-PN
Posted By NF Midwest | On August 28th, 2024 Press Release FDA Grants Priority Review to SpringWorks Therapeutics’ New Drug Applicationfor Mirdametinib for the Treatment of Adults and Children with NF1-PN– PDUFA target action date of February 28, 2025 –– EU Marketing Authorization Application also validated by European Medicines Agency – STAMFORD, Conn., August 28,…
Read MoreExisting Drug Shows Promise as Treatment for NF2-Related Schwannomatosis
There’s some exciting news for those with NF2-related schwannomatosis (NF2-SWN) that might bring hope to treatment options! A recent study explored the use of Brigatinib, a medication already used for lung cancer, as a potential treatment for NF2-SWN. The research, led by Dr. Scott Plotkin and a team of experts from various institutions like NYU…
Read MoreMeet the Faces of NF Care
Have you seen our new video series called Meet the Faces of NF Care? This series is designed to give you, the NF community, a chance to learn more about NF care and the dedicated providers in your area (Illinois, Indiana, Iowa, Kentucky, Wisconsin, and Missouri). Through these informative recordings, you’ll gain valuable insights, including:…
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 More2024 Scholarship Recipients
The NF Midwest Scholarship Program is proud to add another year of empowering students with neurofibromatosis (NF) to achieve their educational dreams. We continue to honor the generous gift from Frances and Irma Napolilli, which allows us to award scholarships of up to $1,500 to deserving individuals. These recipients are models of hard work and…
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