NEW YORK (PRWEB) May 14, 2021
Star-studded event on May 17 to raise funds and awareness for NF, a disease affecting over 2.5 million people worldwide
On May 17, World NF Awareness Day, actors, musicians, comedians, chefs, athletes, and others will come together to Make NF Visible, a World NF Day Live event to benefit the Children’s Tumor Foundation. NF, short for neurofibromatosis, is a rare genetic disorder that causes tumors to grow on nerves throughout the body and 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 recently 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.
Hosted by actor/producer Jonathan Sadowski (ABC Family’s Young & Hungry, Celebrity Top Chef) and stage/film/television actor and singer James Snyder (Broadway’s Harry Potter and the Cursed Child), this virtual benefit will be filled with musical performances by Gloria Gayner, Andy and Aijia Grammer, Jake Clemons (Bruce Springsteen and the E-Street Band saxophonist) and Broadway stars Lena Hall, Denée Benton, Miguel Servantes, and Jessica Vosk; with appearances by Alec Baldwin, Reid Scott, James Beard Award winning TV personality and chef Andrew Zimmern; NFL Hall of Famer Darrell Green, Colorado Rockies’ Ian Desmond, NFL Kicker Nick Folk, WWE star Roman Reigns, and many others. NF patients will also share their stories about why making NF visible is more important now than ever before.
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 have an amputation. 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. This livestream event is about Making NF Visible: seeing NF, and seeing the person living with it.
World NF Awareness Day takes place during NF Awareness Month, a dedicated time every year to bring attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives.
For more information about Make NF Visible: A World NF Day Live Event, visit ctf.org/live.
For more information about the Children’s Tumor Foundation, visit ctf.org.
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 http://www.ctf.org.