Stars Come Together to Help Kids with Rare Genetic Disorder That Causes Tumors

Share Article

Children’s Tumor Foundation to host star-studded event on May 17 to raise funds and awareness for NF, a genetic disorder affecting 2.5 million people worldwide

“I couldn’t be more excited to host this very special online event, Home is Where the Heart Is, bringing together celebrities, actors, musicians, athletes, and NF Heroes, to make sure the world knows what neurofibromatosis is, and why we need to make NF visible," said Jonathan Sadowski.

On May 17, World NF Awareness Day, actors, musicians, comedians, chefs, magicians, and others will come together for Home is Where the Heart Is, a benefit to support the Children’s Tumor Foundation and to Make NF Visible. 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 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.

Hosted by actor/producer Jonathan Sadowski (ABC Family’s Young & Hungry, Celebrity Top Chef), this virtual benefit will be filled with musical performances by Jesse McCartney, Remi Pereira, formerly of The Tenors, and Emily Osment; a cooking demonstration by Top Chef winner Michael Voltaggio; a magic act from America’s Got Talent winner Shin Lim, and appearances by Emily Deschanel, Danica McKellar, Alec Baldwin, Raina Seitel, Patrick Bruel, Howie Mandel, Paul Schaffer, John Stamos, Bob Sagat, Dave Coulier, Gilbert Gottfried, Martin Short, NFL Hall of Famer Darrell Green, Colorado Rockies’ Ian Desmond, NFL Kicker Nick Folk, WWE stars Mike the Miz and Roman Reigns, and many others. NF patients will also share their stories about why making NF visible is more important now than ever before.

“NF manifests itself differently in every patient, which makes it hard to talk about, hard to understand, and harder to live with, but NF patients and their families are some of the strongest people I know,” said Jonathan Sadowski. “I couldn’t be more excited to host this very special online event, Home is Where the Heart Is, bringing together celebrities, actors, musicians, athletes, and NF Heroes, to make sure the world knows what neurofibromatosis is, and why we need to make NF visible.”

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 Home is Where the Heart Is, visit ctf.org/heart.
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.

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Rebecca Harris
@ChildrensTumor
Follow >
Children's Tumor Foundation
Like >
Visit website