Dear Friend,
If this is your first communication from our foundation, The Brain Science Foundation, it is due to us recently porting our foundation to an advance technology platform. Welcome! The Brain Science Foundation supports research and therapeutic clinical trials for primary brain tumors, brain cancers, and brain metastasis. If you choose to opt out of further communication from us, although disappointed, we will not be offended.
Donald Rumsfeld and Brain Tumors.
On the surface, it is not an obvious association, however, probe a little deeper through the “Rumsfeld-speak noteworthy quotes” and we can connect the two. One quote of his that I have often abridged and applied to assessing a chosen business is; “There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don’t know. But there are also unknown unknowns. These are things we don’t know we don’t know.” These are simple and perhaps obvious statements that can be applied broadly across many subjects. When I entered the world of medical research nearly two decades ago seeking knowledge on the conditions, causes and cures for primary brain tumors, it was truly a world where there were far more unknowns than knowns. Or as Rumsfeld might say, it was a world of “unknown unknowns”. Midway through these past two decades, groups of gifted medical researchers, biologists, neuro-surgeons, neuro-oncologist, geneticists, clinical physicians, neuro-radiologist, neuropathologists along with many in the academic, bio-pharma and philanthropic world have garnered millions of dollars to uncover the plethora of unknowns. Collectively and collaboratively they made impressive progress, to arrive at a state of “known unknowns”. Fast forward to today and it appears that exponential progress has been made in knowledge and applications in just the last five years! Much of the progress has been aided substantially by major advances in genomics.
We have arrived at a point of groundbreaking discoveries, in Rumsfeld-speak, we have “known knowns” on the causes, classifications and potential cures of many primary brain tumors, particularly for the most common occurring non-malignant varieties, Meningiomas, which are of special interest to me. To provide a sense on how far medical and clinical science have come in nearly two decades, I will share my personal note to my three adult children this past November:
“I have good medical news to share. As you know, back in ‘97 I had a craniotomy, head surgery for a Meningioma primary brain tumor. It took the surgeons several hours and they managed to remove most, but not all of the tumor. And I know we don’t mention it much but the tumor did leave me permanently blind in my right eye, which occasionally has presented unique challenges. Two days ago, neuro-oncologist, Priscilla Brastianos MD, shared results of genetic screening & sequencing of my brain tumor tissue. After 19 years and lots of research funding, along with extensive cross-disciplinary, cross institutional research, my biopsied tissue was classified as an AKT1 genetic mutation (10 -15% of all Meningiomas). This is a low-grade tumor that typically stays low-grade. AND, better news, there is a known targeted AKT1 inhibitor in phase II clinical trial…which Dr. Brastianos has initiated and now runs! There is even more good news, genetically speaking, it is a sporadic mutation that my offspring (you 3) will not inherit (95% confidence factor). So, a near two-decade personal mystery is revealed! I still have a tumor but maybe it is “the good one”, an orphan among the more common NF2 mutations which is estimated to be 50-60% of the Meningioma cases. I am thankful we established the BSF and funded so many promising research initiatives with gifted scientists and research oriented physicians and clinicians! I am particularly indebted to Priscilla…there are 420+ institutions in her clinical trials. I believe in my heart & mind that she and her collaborators may, in my lifetime, cure many primary brain tumors and brain metastasis!”
So, while Donald Rumsfeld has not discovered causes and cures for brain tumors, using his words does help us all to appreciate that we can go from a world of unknowns to knowns. With collective passion, focus, intellectual curiosity, prowess and the resources (innovation, facilities and funding) we can move the needle to arrive at a place where there “are things we know that we know”, namely understanding brain disease and effective therapies that can be applied.
Although I am reluctant to share my personal family correspondence so publicly, I thought “why not as this is a good news story!” It is not just about my health and wellbeing of my children but is representative of the kind of good news story that can be experienced repeatedly by other patients, their offspring, family and friends. To keep the momentum going, the BSF would like to continue brain tumor research and clinical discoveries in-perpetuity. We would like to do so by establishing a Brain Science Foundation endowed neuro-oncology Scholars Fund and a Brain Science Foundation endowed neuro-oncology brain tumor chair. The income generated from the paid-in capital to both these funds would assure that a revenue stream will be available exclusively for tumor research and clinical therapies every year! It is my goal to have the Brain Science Foundation sponsor and fund the following:
- Underwrite $120,000 of the ongoing clinical protocol for administering the two Meningioma, and three metastatic clinical trials underway with over 420 institutions collaborating throughout the U.S. and internationally. Our goal is to raise 100% of this funding by April 30th, 2017.
- Establish and underwrite a BSF Neuro-Oncology Endowed Scholars Fund for $1,000,000 by July 30th, 2017.
- Establish and underwrite a BSF Neuro-Oncology Endowed Chair for Brain Tumor Research for $2,000,000 by December 30th, 2017
With these three initiatives, both research and clinical therapies will not only be assured to keep apace of the opportunities presented, it will undoubtedly accelerate understanding and treatments for a broader application of knowledge to more brain tumor types and grades! Since my tumor diagnosis in August 1997, I have directed my resources, engaged many family members and friends, dedicated countless hours to learn, guide and motivate many people in the medical community to remain curious, be imaginative, to explore and push the envelope to discover clinical therapies. I am living proof, as are many others, that a brain tumor does not have to define nor own you. It will one day, soon hopefully, be a diagnosis that has at least one or several highly effective treatment options! Any financial support for the three initiatives will be tremendously appreciated.
Thank you, and I hope you had a terrific holiday season and best wishes for a healthy, joyous and prosperous 2017!
Sincerely,
Steven Haley
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