Welcome! It is my great honor to share with you more about the EndBrainCancer Initiative, a collaboration the Chris Elliott Fund has launched on June 29, 2015, as well as our goals and our day-to-day work.
The Chris Elliott Fund was established in May, 2002 by my late husband, Chris Elliott, and I. The reason for this Initiative, the Chris Elliott Fund, and our day-to-day work has always been about IMMEDIATE ACCESS to advanced treatments, studies and clinical trials and the frustration we experienced early on in our brain cancer journey with not being immediately referred to a top brain tumor specialist, neurosurgeon and/or a neuro-oncologist as well as advanced treatments, studies and clinical trials.
We had to learn about all of this on our own and seek these specialists out as well as the advanced treatments on our own. This should not be the case, should not be the norm and as a society, we can and should do better.
The establishment of the Chris Elliott Fund and now the EndBrainCancer Initiative has always been about the fact that offering brain cancer patients a Standard of Care treatment that is ineffective is not an option and the belief that our medical doctors/system can/should be providing better care as the norm by becoming patient focused, empowering the patient with treatment choices as well as looking at alternative treatment options outside of Standard of Care to fight this disease early on/at time of diagnosis as current Standard of Care is not creating the number of survivors that it should be. It has always been about providing HOPE to the patient and to research.
The EndBrainCancer Initiative is a 501 (c)3 IMPACT organization and movement effecting change related to the 3-day window that most brain tumor patients experience between an initial diagnosis of a primary brain tumor and between the time they have their initial surgery as well as future surgeries/resections for tumor removal. We noticed that in most cases, wherever the hospital/institution is that the patient enters, usually via the ER for their symptoms ad diagnosis of a primary brain tumor, is where they are then admitted into the hospital/institution and in most cases, is where they remain to have their surgery after being placed on steroids 3 days or 72 hours later regardless of whether they were being treated at a brain tumor center or with a top neurosurgeon or neuro-oncologist or not.
The EndBrainCancer Initiative plans to change this practice through empowering the patient/caregiver/family within that 3-day window through direct outreach, awareness and education.
Through our day-to-day national work since our inception in 2002 and at the Chris Elliott Fund’s Brain Tumor Patient Support Services & Call Center, just east of Seattle, WA, we continued to see a pattern emerge. We realized that we could intervene prior to surgery and provide KEY educational information directly to the patient/caregiver/family that would IMPACT the patient’s surgery outcome, quality of life, and potential disease outcome. When we did this we realized we would also greatly IMPACT future research, essentially “jump starting” research which would then make enough IMPACT to effect change with the goal of ultimately, changing the Standard of Care for this disease. We realized that our model could most definitely become a model for other diseases as well.
The problem and outcomes we are addressing through our day-to-day personalized approach are:
- Too many people are receiving brain tumor resections/surgeries at their local hospital by others who are not top brain tumor neurosurgeons. Therefore, the patient is denied IMMEDIATE ACCESS to the best, most advanced talent, medical equipment, surgery and related outcome of the removal of as much brain tumor as possible. Statistics show that the more brain tumor tissue that is safely and successfully removed directly correlates to the patient’s survival time. We also want to change the fact that too many top neurosurgeons are tired of “cleaning up” brain tumor resections previously performed by less experienced neurosurgeons who do not specialize in brain cancer tumor resections/surgeries.
- Too many brain cancer patients are DENIED ACCESS to advanced treatment options as most of the tumor tissue is thrown away and further tests are not performed: for DNA sequencing, genomic profiling, MGMT promoter methylation testing, protein testing, etc.—all of which provide patterns and additional clues within the molecular structure of one’s personal brain tumor and provide clues on how best to treat the patient’s brain tumor. We believe these appraches should be the new Standard of Care as current Standard of Care for this disease is ineffective.
- Too many patients are still being treated by others than Top Neurosurgeons and neuro-oncologists and are also DENIED ACCESS to advanced treatments such as immunotherapies, vaccines and devices.
- Only approximately 3% of all brain cancer patients are currently entering into advanced treatments, studies and clinical trials. Research is stalled due to this statistic and I believe that if this trend continues, we will not effectively advance treatment options for this disease and we certainly will not accelerate these options for the patient. We believe our intervention for IMMEDIATE ACCESS will double this # to 6% and increase it to 20% by 2025. The goal is to quickly accelerate these studies by getting patients, as appropriate, into these studies through our services and the services of our partners through this initiative.
I welcome each of you to join and partner with our medical advisory network of top specialists and others associated with the EndBrainCancer Initiative, as I believe that TOGETHER we can “jump start” research by providing IMMEDIATE ACCESS to advanced treatments, studies and clinical trials and through this and as a result of this “jump start” and acceleration, we will then be able to provide these patients with better treatment options that will stem out of this accelerated research approach.
Thank you for joining the “EndBrainCancer Initiative” effort. Please continue to look to us to be informed of the progress of this effort by coming to this website, visiting my BLOG as well as reading my quarterly article as a contributing writer in CURE magazine. Together, we can change the Standard of Care for brain cancer patients! Our team is ready to assist you with IMMEDIATE ACCESS to advanced treatments, studies and clinical trials. We can do this!