My name is Lindsey, and I have lived with NF1 my entire life. My son Bryson was also born with NF1. NF is a group of genetic conditions that affect 1 in every 2,000 people. It causes tumors to grow on nerves throughout the body. There is currently no cure for NF.
I was in and out of doctors’ offices and operating rooms most of my young life. I knew I had a different life, but I never let it put a damper on my positive outlook. Treatments for NF tumors are few and far between, and most treatments simply stabilize these tumors but don’t make them go away.
Right now, there is currently ONLY ONE approved drug for NF, but we desperately need more. Let me tell you why.
Over the last year, navigating motherhood as a new mom with a medically complex baby has not always been easy. I remember when my baby, Bryson, was first diagnosed, and I’d see birth announcements of “perfectly healthy” babies and I would be sad that wasn’t my reality. (Selfish, I know). Healthy babies are such a blessing— but so are babies with medical complexities.
We know that Bryson has a huge tumor, and we know there is no cure. Bryson was on a clinical trial for a MEK inhibitor for eight months until his doctors decided that we needed to stop the trial completely due to the side effects. Bryson’s painful rash just kept coming back and getting worse, even on the lowest dose possible. And now, another clinical trial for a MEK inhibitor won’t accept us because of his reaction to the last MEK inhibitor.
I’m thrilled that there is an FDA-approved drug for NF—but that drug doesn’t work for Bryson. I’m praying we can get him into a new clinical trial for a different MEK inhibitor.
We need more drugs – NOW.
Each advancement in NF research, every discovery, promises hope to people with NF, like me and Bryson, and is a testament to your generosity and belief in a better tomorrow. I am forever grateful for the impact that your donations have had, and I ask you to continue and deepen your CTF support by donating now at ctf.org/timeisnow.
I wish there was a treatment that would 100% work and help Bryson at such a young age! We need a cure. Please donate today at ctf.org/timeisnow and bring hope to all living with NF.
Now let’s END NF! ~ Lindsey
Please watch this short video from Lindsey and Bryson.
