Our 2023 event dates have been announced. Please mark your calendar! Walk in the Wild on April 22, 2023 Dick’s Sporting Goods Pittsburgh Marathon on May 6-7, 2023 The Ann Kramer Memorial NF Golf Scramble on August 4, 2023 Walk in the Park on October 7, 2023 Quarterly Family...
NF1
New FDA approval for plexiform tumor treatment with selumetinibsi
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...
Clinical Trial of Selumetinib
A phase I clinical trial of Selumetinib has shown some early promising results in children diagnosed with NF1. read more at “New Drug Shrinks Pediatric Tumors“.
NF1 and School Issue
Here is a video posted by the NF Network that looks at “NF1 and School Issues“. The presenter is James Tonsgard, MD, Director, University of Chicago Ambulatory Program for NF. He discusses the spectrum and diagnosis of learning disabilities and cognitive issues that can be associated with NF1. He...