Kristen Anderson-Lopez and Robert Lopez to Perform at Rare Disease Benefit Next Week

On Monday, November 18, 2024, NF patients, leading philanthropists, pioneering researchers, top healthcare providers, civic leaders, and champion business partners will gather at Gotham Hall (1356 Broadway, New York, NY) for the annual National Gala. For nearly fifty years, the Children’s Tumor Foundation (CTF) has driven remarkable progress in NF research and clinical care, including achieving the first-ever FDA-approved treatment for NF, with more breakthroughs on the horizon. As the drug discovery engine for NF, their patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster. We are proud to celebrate this progress at this year’s Gala, and look towards a future with more treatment options. 

An evening of inspiration and celebration, the Foundation will present this year’s Humanitarian Awards to Kimberly Snipes and Sarah Wengel. 

Kimberly Snipes will be recognized for her outstanding contributions to the Children’s Tumor Foundation. Her daughter Madison was diagnosed with NF1 at the age of four, and despite the challenges, Kimberly has remained resilient in her commitment to supporting NF research and raising awareness. As a member of the CTF board, she has played a key role in advancing therapies for NF patients, combining her passion as a parent with her expertise as a Chief Information Officer. Her dedication has made a lasting impact on both the foundation’s mission and the families it supports.

Sarah Wengel has been supporting the Children’s Tumor Foundation since 2015, when she first started volunteering for Dancing with Our Stars in Little Rock, Arkansas. She served first as a Star, then as a judge, and most recently on the Arkansas Advisory Board of Directors. Her involvement and leadership in Little Rock helped establish the funds needed to open the Adult NF Clinic at UAMS Winthrop P Rockefeller Cancer Institute, which has been providing much-needed multidisciplinary care to adult NF patients since officially opening in 2022.

Leanna Scaglione will be named the 2025 National Ambassador. This award is bestowed upon an individual with NF to recognize their courage while living with the condition. 

The Children’s Tumor Foundation is honored to recognize Allison and Kip Clarke and celebrate the legacy of their son Quinn, who passed away in 2021 following his third battle with cancer, with a Cloud Carrier Award. Allison, founder of Flashes of Hope, produced “Big Shots Little Stars” a popular Cleveland fundraising event that, over the years, raised millions of dollars that funded critical research into malignant peripheral nerve sheath tumors. 

Kristen Anderson-Lopez and Robert Lopez will give a live performance. The award-winning songwriters are best known for co-writing the songs for the animated musical film Frozen, its sequel Frozen II, and the animated musical film Coco.  

Robert and Kristen’s cousin, Markus, lives with NF2-related schwannomatosis. “We’re thrilled to be included in an evening supporting such a vital organization. We are aware of the urgency for so many families and the need for a cure now.”

The evening will also acknowledge the CTF Junior Board, a group of young professionals impacted by NF whose youthful energy and unwavering passion advance the Children’s Tumor Foundation’s mission.

NF is a group of genetic conditions known as either neurofibromatosis or schwannomatosis that causes tumors to grow on nerves throughout the body. It affects 1 in 2,000 births of all populations, which is about 4 million people worldwide. Anyone can be born with NF, and it affects everyone differently. NF can lead to blindness, deafness, bone abnormalities, disfigurement, learning challenges, disabling pain, or cancer.

To purchase a ticket or make a donation, please visit ctf.org/gala.