The inspiration behind Jason Colodne’s support of the Children’s Tumor Foundation
Jason Colodne has always balanced philanthropy and civic obligations with his professional achievements. The opportunities afforded to him through his firm, Colbeck Capital Management, have propelled his ability to give back and support initiatives close to his own heart. One such area is evident in Colodne’s deeply personal connection to the Children’s Tumor Foundation (CTF). His late sister, Bara Colodne, supported the Foundation and was also a beneficiary of their services while living with health challenges presented by neurofibromatosis (NF).
Colodne is the co-founder of Colbeck Capital Management, a New York City-based commercial lending business. Colodne established Colbeck in 2009 and today serves as both managing partner and senior transaction partner, overseeing all components of investment execution and portfolio management. Both Colodne and Colbeck remain dedicated to CTF’s mission and the importance of NF awareness and research.
About the Children’s Tumor Foundation
The Children’s Tumor Foundation was founded in 1978 as a grassroots organization. CTF dedicated itself to awareness and research specific to neurofibromatosis, a family of disorders that causes tumors to grow on nerves throughout the body. Today, there is still no cure for NF although there are several promising clinical trials underway.
NF includes three separate disorders: NF1, NF2, and Schwannomatosis. NF is a debilitating illness that can lead to progressive secondary ailments and disabilities as tumors grow or spread. These can range from blindness, deafness, bone abnormalities, disfigurement, learning disabilities, and cancer. The disorder affects one in every 3,000 children across all global population identities. Today, there are millions of children who suffer from NF and its effects on them as well as their families.
CTF is a 501(c)(3) organization recognized globally for its impact as a driving force working to end NF. The Foundation’s mission is to “Drive Research, Expand Knowledge, and Advance Care for the NF Community.”
According to CTF, half of the people who develop either NF1 or NF2 inherit the disorder from a parent. Others appear to develop the disorder due to a spontaneous change in a particular gene in an egg or sperm cell. People who have NF1 or NF2 have a 50% chance of passing the condition on to their offspring. The third NF type, Schwannomatosis, is not as well understood as its counterparts. The majority of cases appear to occur by chance and not through inheritance. Through increased research, the Foundation seeks to uncover more about all forms of NF in order to eliminate them for good.
The Foundation’s efforts are already producing positive returns and hope. In April 2019, the U.S. Food and Drug Administration gave a Breakthrough Therapy Designation to selumetinib. In April 2020, the FDA approved the use of the drug to fight NF.
In the past several years, CTF has reported success in several important areas related to treatments and patient care including:
- More than 70% of patient participants in a clinical trial of selumetinib experienced a reduction in inoperable plexiform neurofibromas of 20–60%.
- The BRIDGE initiative started in 2019 is designed to bring together partners to use neutral information and drug assets from discontinued treatments. The goal is to provide more dynamic pathways to marketable drugs.
- Significant progress in NF2 gene therapy studies has shown value in using a healthy copy of the NF2 gene in animals. The next step is to determine whether NF2 tumors in mice respond to the gene therapy by shrinking or slowing growth.
Bara Colodne’s Journey with NF
Bara Colodne was diagnosed with NF when she was only three months old. Throughout her life, she endured more than 30 operations and procedures. The interventions left her with permanently damaged vocal cords and a raspy voice, but she remained undeterred by her health challenges.
“NF is part of who I am, and I choose to see it as a gift. Without my life’s experiences, I would not be where I am today. NF has taught me many lessons: to be strong, to be a fighter, to push myself harder and to become a better person,” Bara Colodne wrote on the CTF website. “Having NF has allowed me to show compassion toward others and to see that we are all beautiful and special in our own ways.”
Bara Colodne was named an NF Ambassador for CTF in 2004. She also served as a volunteer and advocate for the organization throughout her life while living in New York City and working as a social worker. She died at 39 in 2019 due to complications from NF1.
“Bara was incredibly strong and saw NF as a gift,” Jason Colodne reflected. “She always said that the disease taught her valuable life lessons. Bara left behind a legacy of compassion and strength, and I’m determined to continue supporting the NF community, and specifically CTF, as she did so selflessly during her lifetime.”
In honoring his sister’s legacy and work, Jason Colodne fully supports CTF’s mission and goals. He and Colbeck Capital Management are involved with the Foundation through donating funds, organizing fundraisers and participating in events.