beNeFit XI

Thank you so much for joining us at beNeFit XI! It was an honor to spend the evening with you reflecting on 11 years of progress in our fight to find a cure for NF. We were proud to celebrate the life of our son, Nick Gilbert, who inspired our commitment to NF research and whose spirit continues to guide our efforts.

On Saturday, you and over 1,800 other supporters came for a color-filled night to end NF and your enthusiasm shone as brightly as the vibrant halls of Huntington Place. We broke all previous fundraising records to raise over $10.5 million in support of research and advocacy for NF Forward and the Children's Tumor Foundation. Because of you, we are one step closer to living in a world without NF.

Already, we have seen great advancements, including groundbreaking treatments and therapies that are positively impacting the lives of those living with NF. This progress would not be possible without your continued generosity.

You can watch our scientific research update videos HERE and HERE to see the enormous progress being made with your help. We are also excited to highlight the presentation of the first ever Head and Heart Award to Dr. Roger Packer, which you can watch HEREA recap video of the entire event will become available in coming weeks for you to share the night with anyone who couldn’t be there.

We could not imagine a better theme to honor Nick’s life. In a world that is too often gray, Nick provided color, creativity, and enthusiasm. His commitment to live life to the fullest affected everyone he met and is his most enduring legacy.

In our family, we often say that you can’t control the cards that you are dealt, only how you choose to play them. Nick chose to live his life on his terms and to not be defined by his condition. He was fortunate, as is our entire family, that he had the support of an entire community behind him. Thank you again for fighting alongside us.

Strength & Honor

Nick Gilbert

⁠For 26 years, Nick embodied the spirit of this award. He showed strength everyday by choosing to focus on the positive and not allowing NF to take from his eternal sense of optimism. He showed honor by sharing his story and acting as a tireless advocate for the millions of people living worldwide with this disease. Though Nick passed away earlier this year, we know that his legacy will live on forever through the deep connections and relationships he fostered with his friends, family and the broader NF community.

Head & Heart

Dr. Roger Packer

Dr. Roger J. Packer is the Gilbert Distinguished Professor of Neurofibromatosis, and Director and Chief of both the Gilbert Neurofibromatosis Institute and the Brain Tumor Institute of Children’s National Hospital (CNH), Washington, DC. Throughout his career, Dr. Packer has been heavily involved in clinical and applied basic science research focusing on the treatment of children with brain tumors and those with NF1; developing and leading clinical/translational trials.

Honorary Committee