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Children’s Tumor Foundation Hosts First-Ever “National Celebration Concert to End NF”

Music Legends Gavin DeGraw and Emmylou Harris to headline star-studded evening

On Monday, November 16, 2020, the neurofibromatosis (NF) patient community, joined by leading philanthropists, medical professionals, civic leaders, and businesses, will gather virtually for the first-ever “National Celebration Concert to End NF.” This live streamed event will unite participants in a celebration of NF research advancements, sharing inspirational patient stories of courage, and honoring those who have stood out in support of the Foundation’s longstanding commitment to driving and funding the best and most promising NF research.

This star-studded evening will be the culmination of a “Year of Firsts” for the Foundation: the first drug approved for neurofibromatosis type 1 (NF1), the first platform trial for NF2, and the first trials for cutaneous neurofibromatosis and for schwannomatosis.

An evening of inspiration and celebration, the Foundation will present this year’s National Humanitarian Award to Jack Burke. Jack and his family have raised millions of dollars to support the mission of CTF through their foundation, CureNFwithJack, and through their participation in the annual Cupid’s Undie Run. While still a teenager, Jack is also an ardent public speaker, influencing both corporate executives and perfect strangers alike to invest in our collective mission to end NF.

For Jack, living with NF has brought many challenges. Since being diagnosed at the age of two, he has had an eye orbit tumor, a brainstem glioma, eye surgery, brain surgery, and two surgeries on his foot to help him walk with less pain. He has also endured more than 52 weeks of chemotherapy, so finding a cure for the 2.5 million people who are affected by NF is very important to him and his family.

The Children’s Tumor Foundation is proud to honor AstraZeneca with the Scientific Innovation Award for its commitment to innovative research, improving patient outcomes, and bringing new treatments to the forefront for those living with NF. AstraZeneca, a global, science-led bio-pharmaceutical company that focuses on the discovery, development, and commercialization of prescription medicines, recognizes the importance of investing in rare disease, and is paving the way toward further treatments for more than 2.5 million individuals living with NF across the globe.

“We are truly honored to receive the Children’s Tumor Foundation’s Scientific Innovation Award,” said Chatrick Paul, Head of AstraZeneca’s U.S. Oncology Business. “As a company, we strive to bring about scientific innovation, but we know that medicines are only one of the ways in which we need to support families living with NF. We’re proud to be a part of this active neurofibromatosis (NF) community, and we hope to continue to drive innovative research that improves the lives of people with NF, and to support the children, parents and families living with this disorder.”

The Children’s Tumor Foundation will also introduce and honor its 2021 NF Ambassador, an award bestowed upon a young adult living with NF to recognize their courage living with the disorder and their personal efforts to further the Foundation goals of research, public awareness, and patient support. The 2021 NF Ambassador is Lilly Ann Brooks, a college student living with neurofibromatosis type 1.

Lilly Ann was diagnosed with NF when she was 18 months old and has tumors on her spine, neck, chest, and upper right arm. She suffers from severe scoliosis because of neurofibromatosis. But that has never stopped Lilly Ann. Since June 2016 Lilly Ann has been taking the MEK inhibitor selumetinib (Koselugo) as part of the clinical trial which brought this first drug for NF to market, and she has seen a 20% reduction in the size of her tumors.

Today, Lilly Ann is a sophomore at the University of Alabama where she is also a proud Alpha Delta Pi sorority member.

We’re also pleased to share that last year’s recipient of the NF Champion Award, Ian Desmond of the Colorado Rockies, will present the award this year to passionate CTF crusader and Foundation friend Jonathan Sadowski. Since first becoming involved with CTF in 2015 when he hosted the Foundation’s  annual LA Fashion Show for NF patients and families, Jonathan has hosted countless more fashion shows and other in-person and virtual events, including the first NF Awareness Month virtual ‘Home is Where the Heart Is’ Zoomathon livestream on May 17, World NF Awareness Day. Jonathan’s exuberance and charm has helped raise much needed funding for NF research, and brought awareness of NF to new audiences in both the entertainment industry and beyond.

“We are so grateful and fortunate to partner with AstraZeneca, CureNFwithJack, Ian Desmond, Jonathan Sadowski, Raina Seitel, Darrell Green, Gavin DeGraw, Emmylou Harris, and Denée Benton,” in order to help patients like Lilly Ann Brooks, Jack Burke, and the millions of people living with NF worldwide,” said Annette Bakker, Children’s Tumor Foundation President. “The past year has certainly been unique, but one thing that never wavered was our commitment to fighting NF, funding critical NF research, and recognizing the incredible NF Heroes who live with NF.”

The Celebration Concert to End NF will feature exclusive performances by Gavin DeGraw, multi-platinum selling singer, performer and songwriter, Emmylou Harris, 14-time Grammy winner and Billboard Century Award recipient, and Denée Benton, who recently starred as ‘Eliza’ in Broadway’s Tony Award winning musical Hamilton.

Actor and producer Jonathan Sadowski, NBC Host and Correspondent Raina Seitel, and football legend Darrell Green will serve as masters of ceremonies.

To register, make a donation, or purchase a sponsorship, please visit