Make NF Visible

Neurofibromatosis, NF for short, is a rare genetic disorder that causes tumors to grow on nerves throughout the body. It affects 2.5 million people around the world, yet few have heard of it. That’s because there is no one way to define neurofibromatosis; it affects each patient differently.

In some patients, NF is visible; patients are often covered with café au lait skin spots or disfiguring tumors. Many have bone problems causing them to wear a brace or even amputate. In some patients, NF is invisible; healthy-looking patients on the outside live with excruciating pain on the inside. Many have challenging learning disabilities. Others have hearing or vision loss or have brain tumors and are bound to years of chemotherapy. There is no one way to define NF, and as a result, there is no one way to define a person living with NF.

LIVING WITH NF

“It is important that we make NF visible because people need to understand that although we may look different, we are still individuals with goals and aspirations,” said Brianna Worden, a young woman living with neurofibromatosis type 1 (NF1). “It is also important to remember that no two cases are the same, we all struggle in our different ways.

We should all work together and lift each other up. No one should feel excluded. We will work together in order to fight for a cure.”

It takes a village to manage the challenges of NF. Depending on the patient, life with NF can mean living with things like neurofibromas and learning difficulties, loss of hearing and excruciating pain, failed clinical trials, physical scars, and emotional wounds. Still, with wider awareness spread through cross-country networks, it can also lead to unspoken understanding, successful surgeries, and unbroken bonds.

“There is no part of NF that doesn’t shape every moment of every patient’s life in ways big and small. With no cure and few manageable treatments, this can dramatically alter the life experiences and opportunities of those who are in the throes of it. Creating a wider awareness and understanding of the disease and its struggles, which run deeper than the eye can see, can lead to a more empathetic, vibrant, hopeful, and opportunity-filled world for everyone who deals with this. The more people who are aware of NF, the lighter its burden becomes on those who live with it, and the greater chance that this disorder can become a smaller, if not non-existent, blip on the radar,” said Laura Barbieri,

an adult living with neurofibromatosis type 2 (NF2).

When faced with a diagnosis, the road ahead may look scary. Regardless of how NF manifests, each patient shows resilience, courage, and puts their all into facing another day. Their bravery not only helps raise awareness and visibility for NF but also helps healthcare workers in their efforts to find a cure.

“It is extraordinarily important to make NF visible. NF is an orphan disease with a huge variation in the way it manifests itself,” said Ken Rudd, an adult who lives with NF1. “When strangers look at me, they know something is wrong. But that is far from true for many with NF. Continuing to make NF visible means getting researchers to work toward treatments and a cure; it means further educating clinicians; and it means helping those of us with NF feel comfortable telling our stories.”

There is no cure for neurofibromatosis, but there is one approved drug to treat inoperable plexiform neurofibromas, a subset of NF1 patients. Discoveries from Children’s Tumor Foundation-funded researchers led to the development of this treatment, and making NF visible and creating more awareness will only lead to more funding for critical research for all manifestations of NF.

VANCOUVER CONVENTION CENTRE, B.C., CANADA

LA SAGRADA FAMILIA, BARCELONA, SPAIN

SHINE A LIGHT ON NF

NF affects one in every 3,000 births across all populations equally, and there is still so much to learn. There is no cure yet, but the Children’s Tumor Foundation’s mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF.

“By making NF visible, the world will have more information and NF awareness,” says Yaniry Lora, an adult living with NF1. “There will also be more donations given for NF research and clinical trials. As we let the world know about NF, the less embarrassed we will be of ourselves and showing our tumors.”

Every May, hundreds of buildings, bridges, waterfalls, and other landmarks light up in blue and green, the official colors of the End NF cause, to Shine a Light on NF. Over the years, iconic places worldwide such as Niagara Falls, the Coliseum in Rome, La Sagrada Familia in Barcelona, BC Place in Vancouver, Story Bridge in Brisbane, and London’s National Theatre have helped us raise awareness and make NF visible.

Shine a Light on NF is one part of a month-long awareness campaign that consists of online activities and community events designed to Make NF Visible and educate the public about this under-recognized and

life-changing disease. Whether you show your support by joining a community walk, decorating your own home with CTF spirit, or making a donation to a Shine a Light NF Walk, your contribution helps fund research to help better the lives of the millions living with neurofibromatosis.

JACKSON DECILLIS, AIDAN FRASER BRIANNA WORDEN AND MARCUS RATLEY ALEXANDRA MORA AND DANIEL MCAVOY

CHILDREN’S TUMOR FOUNDATION

The Children’s Tumor Foundation is the world’s leading nonprofit dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide living with NF, a group of genetic disorders that causes tumors to grow on nerves throughout the body. One in every 3,000 people is born with some type of neurofibromatosis or schwannomatosis, which may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all populations equally, and while there is no cure yet, the Children’s Tumor Foundation’s mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF.

To learn more, visit makenfvisible.org.

2022 NF CONFERENCE JUNE 18 - 21, 2022

LOEWS HOTEL | PHILADELPHIA, PA

2022 NF SUMMIT JULY 21 - 24, 2022

nfconference.orgSWISSHOTEL HOTEL | CHICAGO, IL