VB Gives Back
to
Penny's Flight Foundation
A member of the Penny’s Flight Foundation Medical Advisory Board, Dr. Yohay has specialized in the care of children and adults with neurofibromatosis (NF) since 2002. He first met Penny Doerge in 2009 when she was two and half years old and cared for her for the rest of her life.
“From the moment we met Dr. Yohay, we knew we were in the absolute best hands,” says Kate Doerge, Penny’s mom. “He has the calmest demeanor, and he gave us faith that no matter what happened, Penny would live a beautiful life—and she did.”
Now the director of NYU Langone’s Comprehensive Neurofibromatosis Center, the largest and most active NF clinic in the United States, Dr. Yohay and the rest of the Medical Advisory Board advise Penny’s Flight on areas of NF research and patient care that need attention and funding. It’s that research, along with the vital work Penny’s Flight is doing to raise awareness of NF, that our VB Gives Back donations help support.
Here, we ask him a few questions to clarify this complex condition.
Q&A
What is NF?
Neurofibromatosis (NF) is a set of genetic conditions that cause tumors to grow on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord, and nerves. Roughly one in 2,000 people worldwide are born with NF, which can be inherited or occur
spontaneously through a mutation in the individual's genes. There is currently no cure for NF, but treatment is available for a variety of symptoms that can present from very mild to severe.
Do you have any advice for patients (and parents) who receive an NF diagnosis?
Take a breath. Your child is the same person they were before the diagnosis of NF, and you should have all the same hopes and dreams that you had for them before you knew about NF. Remember that life will feel normal again.
“Take everything you read about NF on the internet with a hefty grain of salt.”
Can you tell us about any of the clinical trials you’re working on?
When I first started taking care of people with NF there were zero clinical trials for treatments, there were no approved medications, and we barely understood the biology behind the symptoms of NF. Today, we have new therapies, multiple clinical trials, a network of clinics for care, and a clinical trial infrastructure. There are ongoing and upcoming trials for many of the different symptoms of NF, including treatments for brain tumors, skin tumors, other benign and malignant NF tumors, ADHD, and bone issues.
What is your hope for the future of NF treatment?
It used to be that when I talked to families with children with NF and patients with NF, I had very little to offer other than education and a better understanding of the condition and what to expect. I didn’t know if there would ever be treatments. Now, my conversations are very different. We have effective therapies with new ones on the way. I can honestly tell patients and families that a cure is achievable in their lifetime.
Penny inspired those around her with her positivity. Can you think of a specific time she inspired you?
Penny had an indomitable spirit. One of my earliest memories of her is when I visited her after a surgery for her leg when she was about three or four years old. Despite just having had surgery and being stuck in bed, she was cheerful, joyful, and full of life. Her smile always lit up the room.
From now to the end of June, we will donate a portion of proceeds from every single veronicabeard.com order to Penny's Flight Foundation, a nonprofit dedicated to funding research of neurofibromatosis (NF) and celebrating the life of Penny Doerge. Learn more here.
