A GENERATION OF NEUROFIBROMATOSIS
PATIENTS
FORGING THE
PATHWAY TO
A CURE
One of my doctors once said, ‘Jack may have NF, but NF does not have him.’ —Jack Burke, National Humanitarian Awardee
IMAGINE
being told by your doctor that tumors are growing in your body. There are limited drug interventions available that might help, but they may also have no effect. Your pain can be treated, but not necessarily all of it. And it’s unknown if and where you’ll grow more tumors. Essentially, you’ll just have to wait and see what happens. This is the reality for the 1 in 3,000 people around the world living with neurofibromatosis (NF for short), a genetic disorder that causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning
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disabilities, disabling pain, and cancer. This is a community of patients that, while used to hearing “wait and see,” is not one to sit back and do nothing. They read, learn, advocate, raise awareness, and raise money to fund research—patients like Jack Burke and Lilly Ann Brooks. Jack, now 15 years old, was diagnosed with neurofibromatosis when he was 2 years old. For Jack, NF has brought many challenges. He has an eye orbit tumor surrounding the left side of his face, which, at 6 years old, required a tumor debulking surgery and reconstruction. When Jack was 8 years old, he was diagnosed with an inoperable brainstem glioma, which led to a year of chemotherapy in second and third grade. Due to complications from this glioma, at the age of 10, he had brain surgery to relieve
the pressure building in his brain and spinal cord. Two years later, it became painful and hard for Jack to walk, leading to a three-part surgery for each of his feet. Jack sees well over a dozen doctors and specialists, has had more than 40 MRIs since his NF diagnosis, and sees a number of different types of occupational and physical therapists. When Jack was 6 years old, he started a nonprofit to raise money and help kids just like him. The foundation, CureNFwithJack, has since raised millions of dollars for NF research. While still just a teenager, Jack is also an ardent public speaker, influencing both corporate executives and perfect strangers alike to invest in our vision to end NF. In November 2020, Jack received the Children’s Tumor Foundation’s National
