It Wasn't By Choice

Twenty-three years ago, our 12-year-old daughter was diagnosed with neuroblastoma. The doctors told my wife and me our daughter had a 45% chance of survival. Seven months later, when she relapsed, that all changed. The doctors informed us she wasn’t going to make it. But we were convinced there was someone out there who could save her. I started reading medical literature and attending medical conferences throughout the United States; we went to see top pediatric cancer experts at centers throughout the country, and we found them.

 Since then, she has relapsed six more times, has had over 350 weeks of chemotherapy (mild and heavy), seven major surgeries, countless weeks of radiation therapy, and two years ago was diagnosed with breast cancer and had a double mastectomy surgery (a result of the radiation she received while fighting childhood cancer), she is still on mild treatment (ALK inhibitor), married and doing fine. 

While her battle has been brutal, she is one of the lucky ones. At the beginning of our daughter’s journey, we became friends with eight other families also having a child fighting the same cancer. While our daughter was relapsing, these children were dying. When her last friend died, we decided to start End Kids Cancer.

Help Is On The Way

In communities across our country, many children have a deadly childhood cancer called neuroblastoma (NB). It is the most common solid tumor among infants and a cancer affecting the nerve cells outside the brain.

These children are fighting for their lives—fewer than half will survive. When a child relapses, the survival rate drops into the single digits, and that is true when children are properly diagnosed. Unfortunately, up to a third aren't, causing them to be given the wrong treatments and worse. These children are our focus. 

Treatments for these children involve surgery, chemotherapy, radiation therapy, tandem bone marrow transplants, and antibodies. Chemotherapy and radiation are themselves carcinogenic. If the child is fortunate enough to survive, the likelihood of dealing with long-term side effects is 72%, with 42% being life-threatening. 

That is why harnessing the child’s own immune system is so important. Every one of the doctors on our medical advisory board is focused on training the immune system to fight cancer without toxic lifelong or life-threatening side effects.  Obviously, our first priority is to fund any treatment that can significantly increase survival rates; however, all things being equal, we at End Kids Cancer will lean towards harnessing the child's own immune system -  like how a vaccine works. 

Help Is On The Way!

One of the most important clinical trials we have supported in which a bivalent vaccine targeting two receptors on the cancer cell was used showed tremendous results. This is a huge step towards the future of cancer treatments, not only because of the increased effectiveness but also because the team at Memorial Sloan-Kettering used a vaccine, a non-invasive, non-toxic treatment. We at End Kids Cancer are thrilled and honored to support this extremely significant cancer research. The credit goes to our donors and the team at Memorial Sloan-Kettering.

Supported Trials:

 CAR T-cells, NK Cells, CH14.18, Bispecific Antibody Trial (funding of the Liquid Biopsy Portion), Neuroblastoma Stem Cells, Liquid Biopsy Development, Bivalent Vaccine, another Bispecific Antibody, and Microbiome research.

 Everything we have supported this far has been focused on harnessing the immune system to fight this disease. When a child is diagnosed with neuroblastoma anywhere in the country, there is a high probability that the child will receive treatments developed by the doctors on our Medical Advisory Board. In addition, these doctors are keeping children alive with drugs designated for other diseases years before even clinical trials were opened.

Children, In Many Cases, Are Not Receiving The Most Appropriate & Effective Treatments.

Children, in many cases, are not receiving the latest and most effective treatments because their parents and attending physicians aren't aware of them. In addition, when frontline treatments fail, only a handful of centers have the know-how to deal with a relapse.

We have produced a cancer guide, Steps to Hope. It teaches parents and caregivers how to find these leading pediatric cancer centers focused on their child's cancer, to confirm their child's diagnosis, and get the best cancer treatment recommendations. Steps to Hope is available for free under the resource tab above. Steps to Hope also shows families how to overcome the financial and emotional challenges that prevent many families from getting the life-saving treatments for their children. The guide has a proven record of helping adults fight cancer as well.

 "Steps to Hope" has been well-received among parents of children battling cancer, adult cancer patients, and highly respected cancer professionals. Its notable supporters include Dr. Siddhartha Mukherjee, the Pulitzer Prize-winning author, and Dr. Fernando Stein, the former President of the American Academy of Pediatrics. Dr. Stein has stated that "Steps to Hope" should be present in every pediatrician's office in the country.

With the assistance of Congresswoman Lois Capps, we sent a copy of "Steps to Hope" to then-Vice President Joe Biden. Subsequently, we were invited to represent pediatric cancer research at the Cancer Moonshot Summit in Washington, D.C.

None of this work would be possible without our donors.