Making NF Visible during Neurofibromatosis Awareness Month

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Children’s Tumor Foundation highlights ‘Home is Where the Heart Is’ in campaign to raise funds and awareness for rare genetic disorder. First-ever treatment, Koselugo (selumetinib), recently approved by the FDA, brings hope to millions around the world living with NF

A group of NF patients shared why it's important to them that we make NF visible.

“The NF voice is one that needs to be heard - in fact, it’s over 2.5 million voices worldwide who live with neurofibromatosis,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation.

Today is the first day of NF Awareness Month, 31 days of bringing attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives. NF, short for neurofibromatosis, causes tumors to grow on nerves throughout the body, and it affects all ethnicities, races, and genders equally. In addition to tumors growing anywhere in the body, NF may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in 3,000 people and, while the FDA just approved the first-ever treatment, Koselugo (selumetinib), for inoperable plexiform neurofibromas, there is no cure at this time for NF, which is why it is crucial to Make NF Visible.

This year, the Children’s Tumor Foundation NF Awareness Month campaign will focus on the external things the NF community is doing to raise the profile of this rare disease, and the internal struggle patients experience living with a genetic disorder that manifests differently in each NF patient (sometimes externally, and often internally). While the current environment has everyone at home and ‘socially distanced’, there are still many things patients, families and their supporters can do to Make NF Visible through a collection of ideas themed Home is Where the Heart Is.

  • Previously, the Foundation drove NF awareness through the Shine a Light on NF campaign, which last year realized over 300 architectural icons, buildings, and bridges worldwide lighting up in blue/green in recognition of the NF movement. With many public locations closed due to the COVID-19 pandemic, the Foundation is encouraging everyone to Shine a Light on NF from home. This includes lighting your home with blue & green lights, hanging an End NF Flag, decorating your driveway or sidewalk with blue & green chalk and End NF messages, dying your hair, painting your nails, creating lawn signs, and more. (On May 17, 2020, World NF Awareness Day, Niagara Falls will still Shine a Light on NF, which will be viewable through an online viewing party, to be announced separately.)
  • The Children’s Tumor Foundation leads the community in making NF visible through the pushes to Wear Blue & Green on May 17 and Wear Green & Blue on May 22 for NF2. These visual cues, utilizing the official colors of the cause and the campaign, are another way that makes the movement accessible, declaring that NF deserves attention and that NF patients deserve a cure.
  • Enter the 2020 Children’s Tumor Foundation NF Awareness Month photo contest and tell us, How Do You Make NF Visible? Submit entries to media@ctf.org.
  • Additional year-round initiatives that peak during NF Awareness Month are #EndNF and I Know a Fighter, making NF visible through the use of a shared social rally cry and storytelling hook that reflects the bravery NF patients exhibit in their daily lives.

“The NF voice is one that needs to be heard - in fact, it’s over 2.5 million voices worldwide who live with neurofibromatosis,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation. “With patients and families leading the way, NF Awareness month brings recognition to society’s all-too-prevalent inattention to NF, offset by the real-life stories of inspiring personal triumph over this devastating disorder.”

The recent announcement from AstraZeneca of Koselugo’s FDA approval, a MEK-inhibitor called selumetinib that in clinical trials resulted in tumor size reduction from 20-60% in over 70% of patients with inoperable plexiform neurofibromas, has opened the door to the potential for the development of treatment options for all NF patients. Expanding awareness and making NF more visible is more critical than ever.

The Children’s Tumor Foundation is also releasing today an exclusive photo collection from award-winning photographer and NF Dad Craig Warga, also called Make NF Visible. This collection of paired portraits looks at the visible and invisible experiences that contribute to the different ways NF makes itself visible in a person’s life, things like brain tumors and cafe au lait spots, neurofibromas and learning difficulties, successful surgeries, failed clinical trials, physical scars, emotional wounds, cross-country networks, unspoken understanding, and unbroken bonds.

“Continuing to make NF visible means getting researchers to work toward treatments and a cure, it means further educating clinicians,” said Ken R., a 51-year-old man living with NF who participated in the project. “And it means helping those of us with NF feel comfortable telling our stories. Making NF more visible is one step towards ending NF!”

For more information on the Children’s Tumor Foundation, as well as all NF Awareness Month campaign initiatives, please visit ctf.org/nfawareness or ctf.org/homeiswheretheheartis.

Exclusive blue and green merchandise can be purchased at ctf.org/store.

About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit ctf.org.

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Rebecca Harris
@ChildrensTumor
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