Notes from the Chan Zuckerberg Intitiative’s Neurodegeneration Challenge Network Meeting

 

“We – the current generation – have a moral responsibility to make the world better for future generations.”  — Dr. Priscilla Chan

 

Last week, over 100 scientists came together at a remote resort in Northern California for the first general meeting of one of the most ambitious projects in the history of medical science – the Chan Zuckerberg Initiative’s (CZI) Neurodegeneration Challenge Network.

CZI is the creation of Dr. Priscilla Chan and Mark Zuckerberg. And while the “Z” in CZI may be what gives the group its substantial backing (and adds a Facebook-sized elephant to discussions about it), it is the “C” that is the driving force spurring it forward…

CZI seems to have been born out of a very genuine and abiding moral obligation Priscilla Chan feels to do good with the unique position she and her husband find themselves in. And CZI has the potential to do a lot of good — the couple has promised to give to it 99% of a net worth currently valued at $60 billion.

The initiative is broadly divided into three arms: Education, Justice & Opportunity, and Science. Last week I was in attendance as an invited speaker for the biggest meeting yet of one of CZI’s largest and most ambitious projects, the Neurodegeneration Challenge Network.

Coming in I had heard a good deal of sneering and skepticism from other researchers over the entry of such starry-eyed tech giants into the biomedical sciences. This cynicism has been bolstered by rumors of grandiose aims like ‘cure all disease’. But the actual stated goal of CZI Science is a bit more reasonable: “support the science and technology that will make it possible to cure, prevent, or manage all diseases by the end of the century.” Though as an added challenge they have chosen as one of their initial focus areas what is arguably the most complex cluster of diseases we know of —neurodegenerative diseases.

The scientists invited included a healthy mix of established world-renowned experts and promising young investigators specializing in a wide range of disciplines from basic biology and brain disorders. For me it was a treat just to be able to pick the brains of people from such diverse areas of expertise and learn about the unique challenges faced in each disease, as well as the common threads that tie them together.

And just as important as the cultivation of new minds to this problem is the development of new tools that will allow us to probe our biology a little deeper and collaborate in new ways. To that end to help accelerate their research efforts they are supporting the development of programs like the Human Cell Atlas, Protocols.io, Meta, and more.

I also found myself agreeing with many of the guiding principles that form CZI’s approach to tackling disease. These include: their belief that each neurodegenerative disease is not one but hundreds of diseases, the need to break down the silos dividing medical research, the emphasis on clinical relevance, the consideration for the relationship between the brain and the rest of the body, the broad search for new mechanisms that trigger and drive disease progression, as well as a commitment to open science.

But for many in attendance the most memorable part of the week was the patient perspectives. Each of the days was highlighted by a talk from a patient-clinician team representing a different disease area. Even though I was there as part of one of those pairs (with the brilliant Dr. Alice Chen-Plotkin) representing Parkinson’s disease, I too was struck by the perspectives brought by the other patients that had come to present to the group.

The first was Brian Wallach. Diagnosed with ALS three years ago at age 37, Brian has spearheaded the creation of I Am ALS, an organization aimed at finding a cure for a disease that kills most who get it within five years. He had an infectious spirit about him which he drove home with the message “Incurable simply means it hasn’t been done yet”.

The second patient perspective came from Tom Cox and his wife Lori Cox. Tom was diagnosed with Frontotemporal Dementia (FTD) in 2017. No other disease I have seen has left quite the impression on me that FTD has. It has reminded me once again of the incredible complexity of the human brain and the frightening impact that disorder in one small part of it can have on so much of who we are.

These perspectives (and I think my own as well on the third day) had a particularly strong effect on the young scientists in attendance, reinforcing for me just how important it is that they be often reminded what the lived experience of these diseases is really like. Going forward, more such efforts are needed to bring together the various stakeholders to learn from each other as we work towards a future than can deliver on the lofty goals set by CZI.

 

Thank you to everyone involved at CZI for inviting me for what was an invigorating and inspiring week, and for the ambition to take on this grand project.

Click here to learn more about the specific research projects that make up CZI’s Neurodegeneration Challenge Network.

 

 

 

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