For Jason Colodne, the quest to find a cure for neurofibromatosis is personal. His sister Bara Colodne endured the condition from birth, facing over 30 operations and procedures throughout her lifetime in an attempt to improve her quality of life and care. While the debilitating genetic disorder, which causes tumors to form throughout the nervous system, eventually caused Bara to succumb in 2019 at the age of 39, the Colodne family's support for improving patient outcomes in the area of NF continues to this day.
Jason Colodne and Colbeck Capital Management have been strong supporters of the Children's Tumor Foundation, which is focused on driving research and advancing care for everyone in the NF community. Bara herself was a CTF champion and was named an NF Ambassador for CTF in 2004, where she served as a volunteer for events and an advocate for others in spite of her own struggles. "Bara was incredibly strong and saw NF as a gift," Jason Colodne shared. "She always said that the disease taught her valuable life lessons. Bara left behind a legacy of compassion and strength."
Donations are the lifeblood of the nonprofit organization, which routes 84% of its funding received back into programs for research, medical, public education, and patient support pursuits. Running as lean as possible, CTF accepts donations of any size from individual and corporate contributors that support their mission to end NF. There are a number of ways for the community and organizations to get involved and give back to CTF. Recurring gifts, family funds, planned bequests, and IRA charitable giving simply scratch the surface. The foundation holds several unique fundraising events each year, many of which Colbeck Capital has participated in or supported.
One such event was the 2022 TD Five Boro Bike Tour, which brought cyclists throughout New York City together through Bike New York. Colbeck directly sponsored the NF Endurance Team on the tour, which was held on May 1. In the 44th year of the event, over 32,000 riders took part, which helped highlight the importance of biker safety and education in addition to the individual causes of the bikers themselves. CTF was a 2022 charity partner for the event, helping it raise even more awareness for NF through the tour.
Awareness about NF, how devastating it can be, and how urgently a cure is needed takes the spotlight of most CTF events, and the foundation's World NF Awareness Day Live Event was no exception. Held in Los Angeles live from The Three Clubs on Vine, donations like Colbeck's were part of a livestream fundraiser that included a telethon-style presentation and entertainment. Another remote event that Colbeck sponsored, the CTF Virtual Research Reception, made it a priority to preview the research and findings to be presented at the 2022 annual NF Conference. The reception, held on June 8, brought together leading experts in the field of NF to give an update on the state of NF exploration and care. It's worth noting that the NF Conference itself is the largest gathering in the world of clinicians and researchers involved in the fight for a cure for NF.
The Children's Tumor Foundation holds events to bring members of the community and its supporters together. Colbeck continued its sponsorship with the 2022 National Gala at Gotham Hall in New York City on Nov. 14. The gathering is, in part, the foundation's yearly tribute to members of the community who have made a significant impact on research, awareness, and support for those with NF. Honorees for the night included humanitarian and innovation in medicine awards designed to recognize key contributors to the foundation. The gala allowed friends and families of those affected by NF, like the Colodnes, to come together and celebrate the lives of loved ones.
Colbeck Capital Management also bought into CTF's annual online charity poker tournament. The fundraiser, held Oct. 6, 2022, brings donors together for a fun evening while also reiterating the importance of the mission to end NF. All proceeds from the event were put toward the nonprofit's mission to improve awareness and outcomes for those suffering from NF. Players were treated to the chance to win prizes and rebuys at a cost to continue to contribute to the foundation.
For more information about how to get involved and support the Children's Tumor Foundation, visit www.ctf.org. Funding toward critical research, care, and educational resources relies heavily on donations from individuals and organizations who give what they can, when they can, making progress a reality for the over 2.5 million people worldwide who are affected by neurofibromatosis.