Pfizer spins out SpringWorks Therapeutics to focus on diseases like Neurofibromatosis. Read more at “Pfizer Creates New Smaller Company to Focus on Rare Diseases“.
NFCA night with the Pirates. Marianne Cornetti and three additional opera stars blew out the stadium with the national anthem!
If you haven’t signed up for the NF Registry you can use this link to get registered. This patient-centered database allows those living with any form of NF to contribute to research and stay up-to-date on studies of potential treatments.
Enjoy a night out at PNC Park on September 5 as internationally-recognized opera singer and Pittsburgh native, Marianne Cornetti, performs the National Anthem. Proceeds will benefit the NFCA! The NFCA is near and dear to Marianne’s heart as her 15 year old niece, Marykate, was diagnosed with the disease...
Thanks to all of you who joined us for the 23rd Annual Walk in the Wild fundraiser! Use this link to see the photo album.
The Corlls setup a GoFundMe page for the walk and they’ve already raised close to $800! They also tapped into family and local friends to raise NF awareness and donations by setting up a lemonade stand, placing milk cartons at school and hosting a table at a community spaghetti...
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“.
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.