Jason Colodne, a founding partner at Colbeck Capital Management in New York City, helps support his community by offering his time and financial resources to nonprofit organizations and charities. The Children’s Tumor Foundation (CTF) is one of the many organizations that has benefited from his ongoing support.
What Is the Children’s Tumor Foundation and Neurofibromatosis?
CTF began as a grassroots organization in 1978. The goal of the organization is to find a cure for neurofibromatosis (NF), a disorder that causes the growth of tumors on nerve endings throughout the body. NF encompasses three distinct disorders: neurofibromatosis type 1 (NF 1), neurofibromatosis type 2 (NF 2) and Schwannomatosis. NF affects approximately one in 3,000 people across the world. Although people are born with NF, its effects do not always appear until later in life.
Approximately 50% of people with NF inherited a faulty gene from a parent. The other 50% of patients represent spontaneous cases and are the first in their family with the condition. Children born to a parent with NF have a 50% chance of inheriting the condition themselves. With NF, a gene mutation causes the faulty growth and development of cells. The cells then grow and divide, causing tumors to grow on the skin.
Some people with NF develop café au lait spots resembling coffee stains that others mistake for birthmarks. Non-genetic cases of NF occur when a gene from either the sperm or egg mutates during the process of conception. Besides the disfigurement of living with up to several hundred tumors on and in their bodies, people with NF may have any of the following challenges:
- Blindness or poor vision
- Bone deformities
- Chronic pain
- Increased cancer risk
- Learning disabilities
Although there is still no cure for NF, CTF is working hard to change that through its advocacy and research. The organization also works to educate the public about NF and the challenges it presents to families along with advancing care for those with the condition. CTF is a 501(c)(3) nonprofit organization based in New York City. The mission statement of CTF is “Drive Research, Expand Knowledge, and Advance Care for the NF Community.” Because NF is a genetic disorder, much of CTF’s research efforts go toward studying gene therapy.
In addition to fundraising and research, CTF hosts speakers to provide more in-depth information about NF to patients, family members and anyone wanting to learn more about the condition. The Foundation also sees these events as a chance to dispel some misinformation surrounding NF such as it being a contagious condition.
Jason Colodne’s Support of CTF
Jason Colodne’s inspiration to become part of CTF comes from his late sister, Bara. Bara was heavily involved as a volunteer and advocate for CTF before she passed away at age 39 from complications of NF1. Colodne, along with his team at Colbeck Capital Management, draws from Bara’s compassion and strength in showing continued support for CTF and the larger NF community.
Colodne stated that donations are instrumental in allowing the charitable organization to fund research that gets doctors closer to a cure for NF. Colbeck has helped CTF arrange and host various events to raise money for NF research and treatment. One recent event was the creation of a cycling team that rode to raise awareness of NF and funds for research. Each team rode for 40 miles through five New York City boroughs.
On February 25, 2021, Jason Colodne helped organize a virtual poker tournament with the proceeds benefiting CTF. Corporate sponsors could donate anywhere between $5,000 and $20,000. Online player participants had the opportunity to compete with celebrity poker players Jason Alexander, David Costabile, Mark Feuerstein and Ben Shenkman. The winner of the online event advanced to the World Series of Poker Main Event slated to be held in Las Vegas in Fall 2021.
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