The KCRF was founded in response to our Executive Director’s personal journey. In 2001, Frank Kalman’s 12 year-old daughter was diagnosed with Neuroblastoma. She has relapsed 5 times, has had 3 major surgeries, and endured over 150 weeks of chemotherapy. At age 25, she is receiving a vaccine strictly for prophylactic reasons. Yet she is one of the lucky ones. Of the dozens of children with NB that she and her father have come to know, all are gone.
In an effort to find a cure for his daughter, Mr. Kalman has scoured the world for promising cures, has traveled to almost every pediatric cancer center in the US, and has attended half a dozen conferences each year speaking to and networking with the men and women conducting crucial research in the field.
It was this approach that led to identifying and recruiting some of the top childhood cancer researchers in the country and identifying the most effective treatments.
The primary mission of the Kids’ Cancer Research Foundation is to provide financial support for research and clinical trials that will cure NB, with an emphasis on non-toxic treatments. While the foundation’s focus is narrow, the benefits derived from advancements made in NB will have broader applications and touch many thousands of lives.
The KCRF medical advisory board is comprised of top pediatric oncologists from some of the most prestigious medical centers in the United States, including Memorial Sloan-Kettering in New York, Texas Children’s Hospital - Baylor, and Children’s Hospital Los Angeles. Again, we depend on these doctors to help define where KCRF should apply the donations we receive throughout the year to achieve the greatest results.
We bring a very unique and valuable perspective in the fight against cancer. The most important question asked by anyone interested in supporting research is whether their donation is going to have an impact.
This issue was addressed in the March 29, 2012 issue of Nature. The authors conclude that there is a serious problem with preclinical data—the foundation for clinical trials and drug development. The article details how Amgen, the world’s largest biotechnology firm. recently tried to confirm the results of fifty-three research papers that were deemed “landmark” studies.
The investigators at Amgen were only able to confirm the results of six of those papers—a shockingly low 11%. A similar study was conducted by Bayer HealthCare in Germany in 2011, which found that only 25% of the papers were able to be validated.
KCRF’s two-pronged approach in finding the most promising research has led to a proven record of success, increasing the probability of high impact for all of our funders.
Our process utilizes a formal approach of assessing statistics and other objective criteria, but we follow that up with a unique outreach that belies our roots as a foundation. Our executive director, Frank Kalman, will regularly contact parents of children going through clinical trials, to get equally valuable anecdotal evidence years before anything is published.
The very first grant the KCRF awarded went to two pediatric cancer researchers, Dr. Malcolm Brenner and Dr. Chrystal Louis at the Center for Cell and Gene Therapy, Baylor College of Medicine, Texas Children’s Hospital. They are working on using T-Cells and mouse antibodies to kill cancer cells. This non-toxic approach is one of the most promising areas of cancer research.
They reported their previous trial and early results in the October 2013 issue of the medical journal Blood. Their early results suggest a reduction of relapses in children by 30%. If these results are sustained it will be a giant leap forward in cancer research.
This team at Texas Children’s Hospital is now working on increasing the effectiveness of the approach to save more kid’s lives. Early last year, the FDA approved Dr. Brenner’s and Dr. Louis’ project to open as a trial, which it did a few months ago. The FDA has also invested over a million dollars in this trial.
Earlier this year we awarded funding to a consortium of investigators who are working on the first study to test administering three cancer drugs simultaneously. The study will help determine the highest doses of lenalidomide that can safely be given together with Ch14.18 and 13-cis-retinoic acid to patients with resistant/relapsed neuroblastoma.
A slightly different version of this trial was presented in the September 30, 2010 issue of the New England Journal of Medicine. This previous trial found a reduction in NB relapse rates from 54% to 34% following a similar treatment course. This treatment was initially given only to newly diagnosed children as up-front treatment, because the agents used in the trial were in short supply. This created an unfortunate bias against children who had relapsed. These are children that face a horrible 5% chance of survival. We are pleased to report that this new trial will include children with relapsed NB, and this particular approach holds great promise for them. The challenge is that it will cost $20,000 to enroll each child in the trial.
Mr. Kalman’s relationships with doctors at NCI and NIH provide a valuable channel of informal confirmation that KCRF is consistently headed in the right direction. Last week, while at a conference in Washington, DC, Mr. Kalman met with our foundation’s long-term contact at NCI, Dr. Malcolm Smith. Dr. Smith shared his excitement of NCI’s support of Dr. Robert Seeger’s very promising NK-Cell clinical trial. We were delighted to hear this because, just last March, KCRF sent a check to support this very clinical trial. Once again, our exceptional track record assures our donors that their money is well-spent each step of the way.
This year, Kids’ Cancer Research Foundation (KCRF) is establishing a new program: the 2014 Neuroblastoma Research Fund. Our goal is to raise $400,000, which will be used to support the most promising translational research projects and/or the most promising clinical trials for neuroblastoma.
Altogether, we envision supporting up to three projects with the potential to be game-changers in the field of pediatric cancer.
Unlike other organizations raising money for pediatric cancer research, KCRF actively studies and seeks out early translational research and new and promising clinical trials. We rely on our medical advisors for guidance on which trials are achieving the most successful outcomes.
Our ongoing review process means that our funding is directed toward the most promising approaches. In December, 2014 the most promising projects, with the guidance of our Medical Review Board, will be chosen and we will award the grants in early January 2015.
Our medical advisors are some of the most capable neuroblastoma researchers in the world. Their work holds immense promise, and has already led to real innovations in Neuroblastoma treatment.
Dr. Robert Seeger, the Chair of our Medical Review Board, has been involved in every major medical development in the fight against Neuroblastoma in recent decades. He is currently the head of a twenty-hospital group called New Approaches to Neuroblastoma Therapies (NANT), consisting of the premiere cancer centers in the country. This group brings a host of promising research projects to our attention, as well as incredible level of talent.
The KCRF team has already been very effective in identifying and supporting promising biological approaches in fighting cancer such as T-Cells, NKCells and CH14.18. Our goal is to continue this work, funding new trials and research that will lead to better treatment options for children and save more lives.
Our agency’s secondary mission is to establish ourselves as a resource to parents and patients dealing with the challenges of a cancer diagnosis. As a result of his daughter’s 13-year battle with NB, our Executive Director has become an unintended expert in dealing with a cancer diagnosis. He has seen firsthand how common misdiagnoses are and how frequent medical errors occur, for not only children with cancer but adults as well. In January, The New York Times reported that overall cancer misdiagnoses are at 28%. According to the September 2013 issue of the Journal of Patient Safety, 400,000 deaths are caused by medical mistakes each year in the United States.
Within this challenging landscape, our Executive Director has uncovered steps and solutions that parents with children that have cancer and adults with cancer can implement to gain the best possible outcome. KCRF recently released a booklet entitled Steps to Hope, which addresses the critical issues of dealing with a cancer diagnosis and minimizing the risk of medical errors. Steps to Hope is a practical guide to navigating both the medical maze and our own fears about what lies ahead.
The two most important things that need to be done following a cancer diagnosis is to confirm the diagnosis at a leading cancer center and then acquire treatment recommendations from several centers with specialists in that type of cancer. Steps to Hope spells out why these two things are so important and how to quickly identify the leading centers utilizing the National Cancer Institute’s website.
Steps to Hope shares shortcuts and tips that have taken our Executive Director more than a decade to identify. The booklet has received very high marks not only from former cancer patients but cancer professionals as well. Dr. Siddhartha Mukherjee – a Pulitzer Prize winner for his book ‘The Emperor of All Maladies’ – recommended that Steps to Hope to be included in a March 2014 Reader’s Digest feature story on our foundation.