Team Julie: Fighting Back Against GBM
The story of one patient's Journey told at the forefront of molecular biology, genetics, immunoscience, and clinical practice
Thirty-seven (37) years ago, I met a lovely and talented young woman on the campus of MIT while we were both pursuing our PhDs. We were married during our last year in graduate school, and have spent every day since raising a family, working in STEM-Medicine fields, and finding time to engage with our communities. We had just retired in 2019 and begun making plans to travel and enjoy life. Then COVID hit followed shortly thereafter by the “Big One”. My wife Julie Rakestraw, PhD was diagnosed with glioblastoma multiforme (GBM) in Dec-2021; the same brain cancer that claimed the lives of President Biden’s son Beau, and Senators Ted Kennedy and John McCain, as well as many others.
In the time it takes for a MRI scan to come up on a hospital ER monitor, our lives changed forever. Where do we go from here?
Fast Forward. Our Journey is now about a year old and still moving forward. Julie is clinically stable, active, feels good, walks 3-4 miles per day with occasional Peloton cycling sessions, and is enjoying each day despite the constant presence of her tumor (call sign “Glio”). Nearby is a recent photo of Julie celebrating her birthday with our children (Stephanie Rakestraw, MD; Alex Rakestraw) juxtaposed against a pre-surgical fMRI of her GBM tumor. The big smiles underscore a wonderful birthday that few people believed Julie would see. Those smiles are a direct result of some incredible and selfless work performed by the amazing addressees of this Letter: also known as “Team Julie”. You are all #BeyondGreat. We are forever in your debt.
We Are Very Fortunate. Owing to my 30+ year career as a Biotech entrepreneur, executive and investor, we are fortunate to be a node in a worldwide network of leading scientists, clinicians, companies, and investors focused on life sciences. As we navigate “The Journey”, I have also increasingly become a hub for the exchange of information and ideas regarding acceleration of brain cancer therapeutic development. We recognize that most families afflicted by brain cancer are not as fortunate. As a life sciences entrepreneur, my thinking naturally turns to potential ways to leverage our network and resources to help other brain cancer patients. This first group of Team Julie posts initiates a growing campaign to focus R&D and investment capital resources on brain cancers. We invite you to visit Mission GBM periodically to learn more about brain cancer and the efforts that we will be making to address an unmet clinical need.
Our Only Objectives. There are two central objectives for this initial Mission GBM post: (1) Raise awareness, catalyze investment and promote innovation regarding brain cancer research and treatment options; and (2) Publicly recognize and thank dozens of worldwide colleagues who have selflessly provided assistance and support to our family over the past year.
Here We Go…
Prior to retirement*, I would periodically be invited to speak at conferences, universities, medical schools and business schools on the topic of technology entrepreneurism, a subject that I know well. Four key messages were always featured in my remarks:
Life is what happens while you are busy making other plans.
In God we trust. Everyone else must bring data.
Invest in real, in-person relationships as they will eventually lead to critical transactions (digital-only “friends” do not constitute real relationships)
Always send your “Thank You” notes.
Following my remarks, students and faculty often asked what is the most rewarding thing that I had received from my career. My answer would surprise them: The personal messages and Thank You notes from patients and their families, often handwritten and sometimes in crayon. Never did I imagine that one day I would be writing such notes to my longtime Biomedical and Clinical colleagues as a result of a critical illness in my family.
With bittersweet motivation and boundless gratitude, linked nearby is an Open Letter to Team Julie; the first of many that I expect to write. If you care to further understand the spectacular work of the Team, please click on the button below to continue reading. It is an engaging story told at the forefront of molecular biology, genetics, immunoscience, and clinical practice; all focused on creating better outcomes for patients.
I guess social media is the best crayon that I have at the moment.
*Retirement is highly overrated. Julie’s condition has created but one job for me to do, and I try to do it just a bit better every day. I am often asked, “How are you doing?” Oddly, I am energized despite the difficult circumstances. When you have an opportunity to work with the best people on the planet to make a difference for patients, it tends to get your motor running.
NOTE: From November 17-20, I will be attending my first Society for Neuro-Oncology (SNO) annual meeting in Tampa along with a team of Biomedical executives and investors. We would be delighted to find time for anyone who wants to get together to discuss brain cancer research, clinical trials, therapeutics development and the investment funding required to drive innovation in a field which desperately needs all of the above to address a large, unmet clinical need. I don’t sleep anyway.
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