On St. Patrick’s Day 2016, my then four-year-old granddaughter Clara was diagnosed with a stage four glioblastoma multiforme tumor—terminal brain cancer. Since that day, I have been fully dedicated to supporting her parents’ tireless efforts to find a cure.
The treatment Clara received is referred to as standard of care (SOC) and is comprised of surgery, radiation, and chemotherapy. Unfortunately, this treatment was, and is, the only treatment available, and is not a cure. Thus, we set out on a mission to find one.
In our search, we met with oncologists from several of the most respected cancer centers, we attended brain tumor conferences, and we explored experimental treatments outside the United States. Sadly, we found that in fact there was no cure. However, we did learn that the recent progress in gene sequencing, immunotherapy, and vaccine technology could well deliver a cure within the next five to ten years—time we didn’t have.
These findings changed our mission from finding a cure to finding a treatment that would sustain her until there is a cure. Unfortunately, we quickly learned that there were no such treatments, nor were any cancer centers working on one. In fact, we couldn’t find any institution with an initiative whose mission was to develop a treatment to sustain the lives of terminally ill patients, regardless of the disease.
There were and are economic and FDA barriers:
- Economic – The expected financial return a life-sustaining treatment offers is insignificant compared to that for a cure. Research for a cure is supported by pharmaceutical companies with patented technology.
- FDA – Clinical trials are very expensive, the protocols are highly restrictive and constraining, and they require years and years of testing—not an option for terminally ill patients, nor for the development of life-sustaining treatments.
With nowhere to go, we started researching all elements of the disease and possible drugs, herbs, devices, and other ingredients and therapies that might delay the cancer returning. Through this process we established a framework for developing life-sustaining treatments for terminally ill patients.
Although developing life-sustaining treatments was not their mission, oncologists at The Tisch Brain Tumor Center at Duke, Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, The New York Genome Center, IBM, and others agreed that this framework made sense. This was just the encouragement we needed to continue to pursue this initiative.
Every day, 42 families in the United States learn that their child has cancer. Every week, 38 children will lose the fight.
The lack of life-sustaining treatment options erodes hope, and hope is a huge element of what is needed to make it through the worst of times. Opening the doorway of possibility to life-sustaining treatment can only have an upside. That is the motivation behind Bridge to a Cure Foundation.
Existing cancer research funding is focused on finding a cure. While advancements in DNA and RNA sequencing, immunotherapy, and vaccine technology are providing optimism, a cure is likely years away. There is a gap between now and the future, one that is not being addressed. Our goal is to bridge that gap.
The mission of Bridge to a Cure is to provide funding for the development of life-sustaining treatments for children suffering from terminal illness.
The expectation is that funded research will not only consider current and prior clinical trials, but also drugs that are off patent, and the many non-traditional or alternative treatments.
LIFE-SUSTAINING TREATMENT FRAMEWORK
- For most terminal diseases, there are essentially four areas to consider in the development of a life-sustaining treatment.
- The cause of the disease
- The disease itself
- The body’s compromised natural protective pathways
- The disease’s energy source
- Within each of these areas, there are numerous possible attack points to be explored so as to identify the best course of action. With the support of IBM’s Watson program, this can be determined by an analysis, performed by specialists (i.e., oncologists for cancer) and molecular biologists, and customized to the patient’s DNA/RNA sequencing and medical history.
- The sequencing center and the patient’s treating specialist, guided by IBM’s Watson, will determine which of the science-based and alternative treatments (drugs, natural ingredients, diet, devices, and others) should be considered in the development of the patient’s life-sustaining treatment.
- Recommended treatment will be based on an acceptable, approved protocol that is less vigorous than a clinical trial. Treatment will reliably provide an acceptable degree of comfort to the terminal patient.
- As an alternative to clinical trials, the disease would be replicated in the laboratory to allow for the testing of numerous options.
- The probability of effectiveness of each of the final proposed treatments would be determined by capitalizing on IBM Watson’s algorithm predictive capability.
Key Success Factors
- Robust database (including information about the disease, patients, sequencing results, and scientific and alternative treatments)
- Accepted alternative to clinical trials
Initiative to Establish Model of Care
- Proposals consistent with the Bridge for a Cure life-sustaining treatment framework are currently being developed for our consideration by:
- The Tisch Brain Tumor Center at Duke University
- Memorial Sloan Kettering Cancer Center
- Dana-Farber Cancer Institute
- The Rockefeller University
Build Public Awareness
- PR firm Wasabi Publicity Inc. launched the Bridge for a Cure traditional and social media campaign in September 2017 for Pediatric Cancer Awareness Month.
Lobbying for Support
- We will begin lobbying private and public sector foundations for support upon acceptance of a life-sustaining treatment framework proposal from one or more participating research organizations.
HOW YOU CAN HELP
Together, we can make a difference to children dependent on a cure that is too distant. Let’s bridge the gap between treatment and cure by funding the first life-sustaining initiatives for terminally ill children.
With your support, children with life-limiting diseases will have a chance to benefit from a cure in the future. Your tax-deductible donation can and will make a difference. Thank you.
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