In this NFNC Blog, we share stories regarding the latest research and breakthrough, information on events as well as stories from individuals and families impacted by NF.
If you would like to submit an article or story to be considered for our blog, please reach out to us.
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!…
DetailsMy 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.
DetailsDesignation 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…
DetailsAstraZeneca 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).
DetailsA team of scientists wants to accelerate research into a genetic disorder by using CRISPR to copy unique mutations from affected children into pigs.
DetailsWhen 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…
DetailsWhen Gregg and his wife, Becky, learned their son has Neurofibromatosis 6 years ago, they took a common first step for parents after receiving an NF1 diagnosis: they Googled “NF”. Online search results revealed imagery of patients with a relatively high burden of cutaneous neurofibromas (cNFs).
DetailsIt is quickly becoming clear that “rocking out” to raise awareness and research funds for neurofibromatosis actually works. And it’s a whole lot of fun!
DetailsTo help kids battling a rare disease, scientists forge a genetic link between people and pigs
DetailsGus Erickson’s super power is making doors open with the wave of a finger.
It may sound silly, but the 5-year-old Rochester boy doesn’t yet understand the concept of automatic doors. His parents, Gregg and Becky, have fed his infatuation with super heroes by encouraging the harmless fun.
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