working to authentically educate, advocate, counsel, support and fund
research initiatives benefitting those impacted by Neurofibromatosis
Join us for BAND TOGETHER – THE REBOOT, featuring multi-platinum singer/songwriter Phillip Phillips, Grammy Award winning band The Okee Dokee Brothers, plus local Madison and Rochester bands and more! Read more…
The documentary series, “Super Human” by Freethink.com took notice of this amazing not-for-profit work being done by a dedicated researcher, who is also an NF dad.
Watch the concert right here! Enter the access code REBOOT above. BAND TOGETHER – THE REBOOT Join Us Sunday, December 20, 2020 at 6:00 PM for BAND TOGETHER! WE BROKE THE INTERNET! That’s right, we had so many people wanting to support NF North Central, UW-Madison’s Biotechnology Center and the NF community, WE BROKE IT!…
My son, Gus, was diagnosed with Neurofibromatosis (NF) Type 1 as a baby. Having never heard of NF, my wife, Becky, and I did our research and quickly learned about all the horrifying physical and cognitive complications that NF can bring. And we decided to hope for the best.
Designation Based on Phase 2 SPRINT Trial in Pediatric Patients with NF1 Plexiform Neurofibromas Selumetinib Is a MEK 1/2 Inhibitor Being Co-Developed by AstraZeneca and Merck KENILWORTH, N.J.–(BUSINESS WIRE)– AstraZeneca and Merck (NYSE: MRK), known as MSD outside the United States and Canada, today announced that the U.S. Food and Drug Administration (FDA) has granted…
AstraZeneca and Merck & Co., Inc., Kenilworth, NJ, US (known as MSD outside the US and Canada) today announced that the US Food and Drug Administration (FDA) has granted Orphan Drug Designation (ODD) for selumetinib, a MEK 1/2 inhibitor, for the treatment of neurofibromatosis type 1 (NF1).
A team of scientists wants to accelerate research into a genetic disorder by using CRISPR to copy unique mutations from affected children into pigs.
When 3-year-old Gus Erickson was granted a wish by the Make-A-Wish organization, he told his mom and dad he wished for a piece of candy. Respecting this wish, his parents relayed it to Gus’ Make-A-Wish Minnesota coordinator. Her response: “Let’s give him some time to think of something bigger—and better—than…candy.” Gus was born with Neurofibromatosis…