Since 1978, Children’s Tumor Foundation (CTF) has been dedicated to finding treatments for neurofibromatosis (NF) and supporting the patients struggling with this often-debilitating disease. NF is a condition that causes tumors to grow throughout the body along the nervous system, affecting a variety of other bodily functions including sight and hearing. What’s more, the condition often leads to a lower quality of life for patients and their families who struggle to provide care and treatment. Children’s Tumor Foundation was founded in response to the growing need in both medical and patient populations for additional support and education around the disease and its outcomes.
As a nonprofit organization, CTF relies heavily on the generosity of patrons like Colbeck Capital Management, who provide funds throughout the year in support of various events. Most recently, CTF held its annual National Gala on November 14 at Gotham Hall. The event was also livestreamed to broaden the scope of those who could attend and participate in the festivities. The program included a dinner and then moved on to honor a number of contributors and ambassadors who helped make CTF’s efforts more feasible throughout the year. This included issuing the 2022 Humanitarian Award to philanthropist and advocate Rachel Tiven and the 2022 Innovation in Medicine Award to Dr. Allan Belzberg, the George Heuer Professor of Neurobiology at Johns Hopkins. The 2022 National Gala was supported by donors including Jason Colodne co-Founder of Colbeck Capital Management, and was hosted by actor and producer Jonathan Sadowski.
Neurofibromatosis affects more than 2.5 million people worldwide, and there is currently no cure for the disease. However, foundations like CTF are dedicated to supporting research that is driven to find a cure as well as therapies that can improve the quality of life for patients suffering from the disease. There are three distinct disorders that fall under the umbrella of neurofibromatosis: NF1, NF2, and Schwannomatosis. Each of these presents a variety of physical challenges to afflicted patients and have a different pathology that must be researched and better understood to develop a cure.
Colbeck Capital Management has supported CTF alongside the Colodne family through many fundraisers for over forty years. Bara Colodne, Jason Colodne’s sister, had neurofibromatosis and served as a CTF ambassador for many years. .
While the quest for a cure continues, Children’s Tumor Foundation’s support and funding for research have contributed to a number of positive outcomes toward that end. In 2020, the number of treatments available for NF grew to include the first FDA-approved drug for NF1. Additional clinical trials have been launched to focus on NF2 and Schwannomatosis individually, and there are now more than 68 clinical trial options now available and active. In 2020, CTF also expanded its Clinical Care Advisory Board to include representatives from Europe and Canada, furthering global collaboration on the research and studies underway. Awareness remains an important tenet for the Foundation, with innovation and patient care focused efforts designed to draw a wider audience throughout the community and bring together researchers to expedite outcomes.
All of these efforts rely heavily on the funds raised through events like the National Gala, which comes from organizations and individual donors alike. Eighty-four percent of all collected funds are rolled back into research and medical (61 percent) and public education and patient support (23 percent) efforts. The organization strives to allocate every dollar to get the most it can out of funds for the community and to advance its mission for a cure. At the center of everything that CTF does are the people who remain affected by the disease. Emphasis is placed not only on research but also on service, helping members of the community find resources to improve their quality of life. The organization also maintains a mindset of yes before no, always pushing to understand the needs of the community at large and doing what it can to serve those needs by exhausting all avenues wherever possible.
