On April 10, 2020, the Food and Drug Administration approved selumetinib (KOSELUGO, AstraZeneca) for pediatric patients, 2 years of age and older, with neurofibromatosis type 1 (NF1) who have symptomatic, inoperable plexiform neurofibromas (PN). Selumetinib, a kinase inhibitor, is the first therapy approved for pediatric patients who have this...
Pfizer spins out SpringWorks Therapeutics to focus on diseases like Neurofibromatosis. Read more at “Pfizer Creates New Smaller Company to Focus on Rare Diseases“.
Here is a nice article on one woman’s passionate pursuit to cure NF, “NF Community – Network Spotlight“.
The NFCA’s Annual Luncheon was held Sunday, October 16 at The Hofbrauhaus at Southside Works. Members of our community gathered to offer each other support and fellowship. Cheering on the Steelers was an added bonus – even if it was for a loss to Miami! Dr. Amy Goldstein, Beth...
Mount St. Joseph University in Ohio signs boy with NF to their football team for a special day. Click the image below to read the article.
Major League Baseball player raises awareness and funds for NF! See more at “Ian Desmond adds up the runs for neurofibromatosis awareness, donation“.
Great story about a group of kids who recently setup a lemonade stand to raise money to help their friend who has NF! See the coverage at KTVB – Friends Support Boy with NF.
Thanks again to Blacktie Pittsburgh for these great photos of our annual golf outing! To see all the photos click View Photo Album.
Coping with Pain: an ACTive Approach Do you have NF1 and one or more plexiform neurofibromas? Do you have pain that has lasted three months or more? Are you between the ages of 16 and 34 years? If you answered yes to all these questions, you may be eligible...
Senate bill threatens Neurofibromatosis research again! Use this link to learn more and take action now. Thanks.