THE NICHOLAS CONOR INSTITUTE Curing Kids Cancer Through Collaboration
Eight years ago, a 15 month-old little boy with platinum blond ringlets and bright blue eyes was diagnosed with high-risk neuroblastoma, a childhood cancer that results in around 255 deaths/year in the United States. Based on the size, location and maturity of his tumor, the toddler had less than 50% chance to live long enough to attend kindergarten. The recommended course of treatment for him was a Children’s Oncology Group clinical trial that included a “standard-of-care” bone marrow transplant. The immediate and long-term side-effects from the treatment itself would have consequences that he would live with for the rest of his life. Even if he survived the treatment, most certainly he would have a depressed immune system, hearing loss, vital organ damage, and be at risk for developing secondary cancers due to the very same treatment that would save his life.
The parents of the toddler are cancer researchers at two of the most prestigious research institutions in Southern California. Unlike most parents of children newly diagnosed with cancer, these parents were armed with decades of knowledge and experience in working with very same drugs that their son would received intravenously. They knew about genetic markers and how these markers could predict their son’s prognosis and response to these drugs. Even though the biopsy indicated the child’s cancer was extremely aggressive, a genetic marker suggested otherwise. The child’s parents decided to not move forward with the bone marrow transplant and instead, treated their son with standard chemotherapy. As the genetic markers predicted, the toddler’s cancer responded. After 3 rounds of chemo, the tumor was removed. The toddler continued on 4 more rounds to mop up any residual cancerous cells. Today, the toddler is now a fourth-grader with no evidence of disease nor detectable long-term side-effects.
"Conor's story has touched my heart but most importantly, people can move the earth with passion. I believe that Beth Anne has the passion to cure cancer for all of the children in the world."
- Janet Vohariwatt,CEO of iChanneX
“On the morning of July 18, 2005, Conor, fifteen months old, woke up and just was not right from the get-go. I naturally assumed that he was in pain from several baby teeth that were erupting. Later that night, Conor developed a temperature and an unusual cough. After a disturbed night, we decided to take him to the pediatrician. Subsequently, after a chest X-ray, the radiologist identified a large mass in Conor’s chest.
Later that afternoon at Rady Children’s Hospital, the attending pediatrician took us into a private room. Nick, my husband, was holding Conor in his arms as she told us that it was very likely that the mass was a tumor, probably a neuroblastoma. Since both Nick and I are cancer researchers, we knew it was the worst possible news."
Beth Anne Baber
Co-founder and CEO
The Nicholas Conor Institute
The Nicholas Conor Institute was founded out of the parents sheer frustration of knowing that existing technology and academic discoveries are not being further developed to save the lives of other children with cancer.
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Why existing technology and academic discoveries are not being further developed for our children, adolescents and young adults?
Venture capital and life science companies do not see small patient populations, such as childhood, adolescent and young adult cancers, as economically lucrative markets. They look elsewhere to invest.
Traditional research institutes do not have the commercial resources available to further develop diagnostics and cancer cures for children, adolescents and young adults.
Federal government granting opportunities steer researchers into other life science areas.
Our youth have suffered the consequences far too long. We need a different business model to help them. The Accelerator of Cancer Treatments in Children (TACTiC™) is the business model by which TNCI operates. The Institute manages a partnership of companies and a portfolio of translation initiatives. Each company partner possesses highly skilled scientific, clinical and business personnel, infrastructure, facilities and vital data.
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