Category Archives: Letters

Donald Rumsfeld and Brain Tumors

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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:

  1. 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.
  2. Establish and underwrite a BSF Neuro-Oncology Endowed Scholars Fund for $1,000,000 by July 30th, 2017.
  3. 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

Previous letter:

November 2016 Letter

November 2016 Letter

This entry was posted in Letters on by .

Dear Friend of the BSF,

Although we have been quiet in our outreach this year, we have not been idle. Tremendous advances have been made on the clinical trial front with three therapeutic trials for primary brain tumors underway and a further three trials in the launch phase. The BSF has transitioned from supporting research initiatives to underwriting elements of multi-faceted and multi-institutional clinical trials. BSF funded investigator, Dr. Brastianos, is running a Meningioma trial in collaboration with the National Cancer Institute sponsored group called the Alliance. There are now more than 400 other entities throughout the U.S. participating. The principal physicians and researchers collaborating are tremendously hopeful that this trial will be a paradigm shift in the management of brain tumors.Read more on foundation medical updates below.

Due to popular demand, the Brain Science Foundation will once again host our Autumn Golf Tournament at Oyster Harbors Club in Osterville, MA on Monday, 18th September, 2017. The day will include 20-25 foursomes across eighteen holes in a scramble format with a shotgun start. There will be contests with prizes and awards presented at a cocktail and dinner reception following the tournament. There will also be a tennis tournament, weather permitting. All participants will be invited to join the festivities, including a silent auction. Most importantly, we will hear from renowned researchers and clinicians in the neurosciences that are a part of the leadership of the clinical trials that receive ongoing support from the BSF.

We are also in the process of updating the BSF website and will be migrating it to a new, more interactive, social and multimedia friendly platform. One example of what’s new is our ‘splash page‘, which gives a succinct overview of the BSF and the outstanding research that we support.

Foundation Medical Update:

At Massachusetts General Hospital:

Priscilla

We are supporting the work of Dr. Priscilla Brastianos, neuro-oncologist and physician scientist, whose research focuses on understanding the molecular mechanisms that drive primary and metastatic brain tumors. Dr. Brastianos is the Director of the Brain Metastasis Program at Massachusetts General Hospital, a unique scientific and clinical program with the primary objective of accelerating scientific findings into the patient clinics. She uses the latest genomic technology and analytic tools to comprehensively characterize the genomics of brain tumors, with a focus on understanding why tumors progress and metastasize.

Dr. Brastianos works with a team of national and international collaborators. The goal of her genomic studies is to arrive at a deep and precise understanding of the molecular pathways that drive the growth of brain tumors. This will then guide the development towards more rational, personalized, multi-faceted and effective therapeutic approaches. Her early pioneering work and novel discoveries, much of which was funded by BSF, now form the foundation of understanding which has enabled Dr Brastianos to initiate five unique clinical trials in primary and metastatic brain tumors, including trials of targeted therapies and immunotherapies. Dr. Brastianos’s clinical trial in meningiomas, which is funded by the Brain Science Foundation, is a national multicenter trial that is now open at more than 400 hospitals. Her work is historic! Dr. Brastianos’ trials in both primary and metastatic brain tumors are the first trials of their kind for personalized medicine applied to brain tumors! They represent a paradigm shift in the management of these common brain tumors. The clinical therapies now in trial have the potential to provide thousands of patients throughout the world an effective path towards treatment and, most importantly, hope for a cure.

 At Brigham and Women’s Hospital:

Golby

As the newly appointed Haley Distinguished Chair in the Neurosciences at Brigham and Women’s Hospital (BWH), Alexandra J. Golby, MD, is spearheading several different clinical and research efforts, with the aim of designing safer, less invasive, and more effective interventions for neurosurgery patients. She is director of image-guided neurosurgery at BWH and principal investigator of the Golby Lab-a surgical brain mapping laboratory at Harvard Medical School (HMS)-where she leads a research team focused on the application of preoperative and intraoperative imaging techniques to optimize neurosurgical care. Her clinical practice includes both stereotactic and image-guided neurosurgery, including special clinical interests in surgery for patients with epilepsy and brain tumors, particularly those whose pathology is intimately involved with critical brain regions. Her translational research connects the bench to the bedside, focusing on the use of structural and functional imaging techniques to guide neurosurgical planning and decision making, while harnessing the power of multiple imaging and brain mapping techniques.

Longstanding support from the Brain Science Foundation has allowed Dr. Golby to expand these efforts and take on additional leadership roles at BWH, including her role as co-director of clinical functional MRI. As co-director of AMIGO (Advanced Multimodality Image-Guided Operating Suite)-a state-of-the-art medical and surgical research environment that houses a complete array of advanced imaging equipment and interventional surgical systems-she continues to advance leading-edge research projects that stand to transform the field. She also supervises the image-guided neurosurgery fellow, ensuring that these techniques and advances are developed within the next generation of talented neurosurgeons. In recognition of her remarkable accomplishments in the field, she was recently promoted to Professor of Neurosurgery at HMS, in addition to her role there as Associate Professor of Radiology. Her appointment to the Haley Distinguished Chair will be effective February 1, 2017.

Fundraising Events:

club

Tee It Up for Brain Tumor Research,the BSF Golf & Tennis Classic, will be held on Monday, September 18th, 2017 at the Oyster Harbors Club in Osterville, Massachusetts. Golfers will enjoy 18 holes on Oyster Harbors’ picturesque course while tennis players participate in a round-robin format. The day will also include contests and an auction including items such as, artwork, sports & theater tickets, hotel nights, museum tickets, and sports memorabilia. Proceeds from this fundraiser will be allocated to the clinical trials for primary and metastatic brain tumors across collaborating medical institutions with leadership provided by physician researchers at MGH and BWH.

For early registration, please call 781-239-2903. Online registration will be open in the New Year. We hope you will be able to join us!

The Brain Science Foundation is so very proud to support the ongoing research to find cures, something not possible to do without the support of friends of the BSF. Please include us in your year-end giving plans and make a tax-deductible contribution online by clicking here or contact the Brain Science Foundation at, PO BOX 812701, Suite 203, Wellesley, MA 02482 or 781-239-2903.

From our family to yours, have a terrific holiday season!

With sincere appreciation,

Steven & Kathy Haley

BSF Co-Founders

To learn more please follow these links to Drs. Brastianos’s and Golby’s Labs:

Priscilla Brastianos, MD; http://brastianoslab.mgh.harvard.edu/

Alexandra Golby, MD; http://golbylab.bwh.harvard.edu/