May 2—To the Editor:

Imagine being told that you have a disorder for which there are few medical treatments and no cure and that it's also progressive. That's what happened to me over 34 years ago when I was first diagnosed with neurofibromatosis (NF).

NF is a genetic disorder that causes tumors to grow on nerves throughout the body and can result in blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and even cancer. It affects one in two thousand people which is approximately 4.5 million people worldwide. It is the most common genetic disorder, yet most people have never ever heard of it.

With no cure and few treatment options, everything felt hopeless. Then I started to realize how I needed to fight NF with strength, dignity and even a sense of humor. I joined forces with the Children's Tumor Foundation (CTF), the largest non-profit organization committed to ending NF through research. CTF believes that full-scale collaboration will lead to solutions for NF. That alliance includes not only clinicians, researchers and other experts in the field, but patients and their families, too. This Foundation has been leading the fight to end NF since 1978, and, in 2020, saw the FDA approve the first-ever treatment, Koselugo (selumetinib), for inoperable plexiform neurofibromas, a treatment that helps a segment of NF1 patients. This momentous step forward started with early research funded by a CTF grant.

May is NF Awareness Month and I invite other members of the community to fight along with all us affected by NF to learn more about NF at www.ctf.org.


Whitney Scheibel

Lexington, KY