END KIDS CANCER
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Mission Statement
Our mission is to provide financial support for preclinical research and clinical trials aimed at finding a cure for neuroblastoma, one of the deadliest childhood cancers, with an emphasis on non-toxic treatments. We support some of the world's foremost childhood cancer researchers, who have consistently led the fight against this awful childhood cancer. Their research has resulted in drugs that have become the standard of care. Many children die needlessly because they do not acquire the latest and most effective treatments. As a result, we have written a cancer guide that shows how to find the most up-to-date and effective treatments. It also shows families how to overcome the financial and emotional obstacles that prevent many families from acquiring lifesaving treatments for their children. This guide earned us an invitation to the White House to represent Pediatric Cancer Research at the Cancer Moonshot Summit. We have discovered a huge gap in pediatric healthcare, particularly in areas related to cancer prevention and other non-communicable diseases. Our focus is distributing vital information to families about reducing their children's exposure to harmful toxins and chemicals in their food and the environment. These toxins are known contributors to cancer, birth defects, and many more life-altering diseases.
About This Cause
INTRODUCTION We are in the process of delivering urgent solutions for critical challenges threatening children's health. Despite medical advances, many children continue not to receive the most effective life-saving cancer treatments while being exposed to environmental toxins that trigger cancer, birth defects, cognitive impairment, and other severe health conditions. While we've successfully supported the development of breakthrough drugs, we've identified two crucial gaps often overlooked by the medical establishment and government agencies: pediatric cancer care navigation and preventing cancer and other non-communicable diseases. Although government institutions, pharmaceutical companies, and major foundations have begun addressing these challenges, their solutions could take years or even decades to implement – if they materialize at all. Meanwhile, children need help today. While drug development and cancer navigation are crucial, prevention offers the greatest potential for reducing the suffering and loss caused by toxic chemicals in our children's environment at the lowest cost. That's why we want to share insights from Dr. Philip Landrigan, one of the world's foremost authorities on the impact of toxic chemicals on children. His landmark research in the 1970s prompted the EPA to remove lead from household paint and gasoline. Additionally, Congress relied on his expertise to evaluate the 9/11 site. WHY WE ARE QUALIFIED TO IMPLEMENT THESE SOLUTIONS HISTORY: Twenty-four years ago, the doctors told us our 12-year-old daughter was not going to make it because she had relapsed with neuroblastoma. My wife and I wouldn't accept it. I started to read the medical literature, attended medical conferences, and took my daughter all over the country to see the top doctors in the field, and we found them. She has relapsed seven times, has had seven major surgeries, a double mastectomy, lost her ability to have children, and approximately 400 (heavy and light) weeks of chemotherapy. She recently turned 36. If we had listened to what the doctors told us and not pursued other options, our daughter probably would not be with us. This misinformation is common. While her battle has been absolutely brutal, she is one of the lucky ones. At the beginning of our daughter's journey, she became friends with eight other children fighting the same cancer. While our daughter was relapsing, her friends were dying. When her last friend died, we started End Kids Cancer. CANCER NAVIGATION: In our 24 years of fighting pediatric cancer, we have witnessed many children die needlessly because they don't get the most effective treatments due to: 1. Lack of knowledge about optimal treatments among parents and attending doctors 2. Parents don't know how to overcome the financial and emotional challenges 3. Parents lack confidence or are intimidated or mistrust the medical establishment 4. Some doctors withholding critical information due to incorrect assumptions, incompetence, lack of thoroughness, and implicit and/or explicit racism 5. Parents are unaware of the steps required to avoid disqualification of their child in a promising clinical trial by the principal investigator of a clinical trial. 6. Here is an additional critical point: children from diverse racial and ethnic backgrounds must be represented in drug development; otherwise, medications may be less effective for these populations—or ineffective at all—due to genetic variations and differences in microbiome composition that can affect drug responses. This is why we wrote our cancer guide called “Steps To Hope”. It shows families how to identify the top centers for the purpose of confirming their child’s cancer diagnosis and confirming their child is obtaining the most effective and advanced treatments. It also shows families how to overcome the financial and emotional obstacles preventing many families from obtaining the best possible care for their children. This guide earned us an invitation to the White House by Vice President Joe Biden’s office. It has been endorsed, most importantly, by parents of children with cancer, adults with cancer, and some of the top medical experts in the country: Dr. Siddhartha Mukherjee, Dr. Fernando Stein, former President of the American Academy of Pediatrics, Dr. Philip Landrigan, and many others. CANCER RESEARCH: Every clinical trial we have financially supported has been focused on harnessing the immune system to fight childhood cancer - with the aim of increasing treatment efficacy without the devasting side effects. This research benefits other cancers, as well. We have supported CAR T-cells, Natural Killer Cells, Monoclonal Antibodies, Stem Cells, Bivalent Vaccine, Liquid Biopsy, and Microbiome research. The Bivalent Vaccine trial we supported reduced cancer relapse rates by 50% for a certain group of kids. We supported early testing of a Humanized Monoclonal Antibody that recently received FDA accelerated approval. Only seven drugs for pediatrics have been approved by the FDA in the last 20 years. By funding Liquid Biopsy Research, our aim is to detect cancer far earlier than is currently being detected. By funding Microbiome Research, our aim is to determine why treatments work for some pediatric patients and not for others and then develop more effective treatments. PREVENTION: While the survival rate for children diagnosed with cancer is increasing because of the improved treatments, the incidents of cancer are still increasing. In addition, other non-communicable diseases are on the rise as well. Children’s legs are cut out from underneath them just as they start out in life by crippling them. WHAT WE ARE SEEING • Certain birth defects have doubled in frequency and are the leading cause of death in infancy. • Learning disabilities affect one child in six. • Leukemia and brain cancer have increased by 40% since the 1970s. • One out of every 68 children born in America is now diagnosed with autism spectrum disorder. • Five hundred thousand children in the US today have been poisoned by lead, causing them to have permanent brain damage. Lead is linked to violent crime. The rise in cancer and other non-communicable diseases is attributed to the increased level of toxins in our foods and the environment. The doctor considered the leader in this field, Dr. Philip Landrigan, has joined our foundation to help distill decades of his research. Dr. Landrigan’s research in the 1970s prompted the EPA to remove lead from gasoline and household paint. Congress relied on him to evaluate the 9/11 site. Our aim, through market research, is to deliver this critical information in the most persuasive manner to expecting parents and parents of young children, ultimately resulting in parents taking simple steps to reduce their child’s exposure to toxins in the child’s food and environment. For this initiative to succeed, it will require market research and marketing campaign and funding.