This episode is a deeply personal one.
The Soapbox Redemption podcast has always been aimed at the big questions – and of course, served with swagger. Since my last podcast, I’ve come across the biggest question yet in my life with my seven year old son William’s brain and spine cancer diagnosis called medulloblastoma.
Words fail to relay the horror that this reality is for a family. I vividly remember the ER physician’s words and body language as he walked back into the room and uttered “I don’t have good news.” Everything immediately looks different and the life you knew before (and expected ahead) is forever changed. Somewhere between denial and acceptance, desperation and hope, you’re faced with the reality that is so little you can do – and so much you can do at the same time.
This episode features a conversation with Fernando Goldsztein who has also felt the horror of a medulloblastoma diagnosis. Fernando is married and has two children and is a businessman from Rio Grande do Sul, Brazil with an MBA from MIT Sloan School of Management.
After Fernando’s son Frederico was diagnosed with medulloblastoma which then relapsed after treatment, Fernando founded The Medulloblastoma Initiative in 2021 to accelerate the development of a cure. the Medulloblastoma Initiative serves as a beacon of hope for families like Fernando who have been told “there is nothing further we can do.”
The Medulloblastoma Initiative is an entirely unique model. It’s an open source innovation model with physicians with 14 of the world’s most prestigious labs and hospitals from across North America, Europe, and Brazil all working together – no bureaucracy or red tape – just full transparency – and 100% of private donated funds going towards actualizing cutting edge clinical trial therapies NOW – and two such trials have been initiated with three more in the pipeline.
This model is extremely timely given the cut-backs to recent pediatric cancer research – and has far reaching implications beyond medulloblastoma. Pediatric cancer research is woefully underfunded, with only 4% of federally allocated cancer funds going towards pediatric cancer. Now, with the opportunities like the MBI, our private dollars can be the fuel and lifeblood of world change.
On his recent MSNBC interview, Fernando has assertively stated “giving up on my son was not an option” and “finding a cure is not an if, but a when.” Fernando’s example serves as a beacon of hope. Where 99/100 people would have accepted the status quo, Fernando refused. This incredible resolve reminds us that changing the world is charge – and it can only be done by world changers. Like in one of my favorite Bruce Hornsby songs “That’s Just the Way It Is”, Fernando and The Medulloblastoma Initiative have stated in their actions – and in no uncertain terms – “ah, but don’t you believe them.” Where pioneers such as Fernando have showed us the way, we can follow and be the change that refuses to accept “that’s just the way it is” for childhood cancer.
Please enjoy this conversation and donate to the Medulloblastoma Initiative here.
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