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…
When 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).
We RACE for Gus, our 7-year-old wild child with a genuine love for life and the people in his.
We RACE for Gus so the world can learn more about the unique condition he was born with.
We RACE for Gus so we can help all those who feel underserved or stigmatized to find support and medical care through a community who understands them.
We RACE for Gus—loudly and unapologetically—so that our government hears us and continues to grant funding for critical and innovative NF research.
We RACE for Gus so that one day, sooner than later, a cure for NF will be realized. And when it is, we will catch our breath and celebrate having crossed that finish line alongside the tremendous community of #NFStrong heroes who helped make it happen, together. We will never stop RACEing for Gus!
—Becky & Gregg Erickson (Rochester, MN)