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 âNational Celebration Concert to End NF.â 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 Foundationâs longstanding commitment to driving and funding the best and most promising NF research.
This star-studded evening will be the culmination of a âYear of Firstsâ 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.
The Childrenâs 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. ROLL TIDE!
For additional information, and to register, make a donation, or purchase a sponsorship, please visit ctf.org/celebration.