What the Chan Zuckerberg Initiative Means for Rett Research

My inbox flooded with emails this past Wednesday following the announcement of the Chan Zuckerberg Initiative. Facebook founder, Mark Zuckerberg and his wife Priscilla, will be investing $3 billion over the next decade (and more billions after that) to help cure, prevent, or manage all disease. But wait…the news gets better. Long time Rett researcher, Dr. Huda Zoghbi, is one of seven scientists on the Scientific Advisory Board advising the Zuckerbergs.

Everyone emailing was asking the same question – does the new initiative bring attention and millions of dollars to Rett?

Having Dr. Zoghbi involved with such a high profile initiative may certainly help bring awareness to Rett Syndrome. Furthermore, because of Mark and Priscilla’s relationship with Dr. Zoghbi, Rett Syndrome is now on their radar screen. More great news!

Will the initiative bring millions of dollars to Rett? The answer is “unlikely”, at least not in the foreseeable future.

While the long-term goal of Mark and Priscilla is to cure disease, they are starting off by investing in tools and technologies to facilitate those cures. Some of the technologies mentioned by Zuckerberg: “AI software to help with imaging the brain…to make progress on neurological diseases, machine learning to analyze large databases of cancer genomes, a chip to be able to diagnose any infectious disease, continuous bloodstream monitoring to be able to identify and catch any disease early, … a map of all of the kinds of cell types in our bodies…”

Comment from Huda

Comment from Huda


These are all valuable endeavors and undoubtedly some of the information that will be generated will be helpful to our cause. It will be some time however before they start tackling disease. In his own words Zuckerberg said, “Remember this is going to be a long-term effort. We are going to invest billions of dollars over many decades but it’s going to take years before the first tools get built and then years after that before they are actually used to cure diseases. So we have to be patient. This is hard stuff.”

I agree, Mark. It is indeed hard stuff. Fortunately, RSRT is not tackling all diseases. Our focus is much narrower: A cure for Rett and related MECP2 disorders. In some respects we are light years ahead of many other disorders including autism, Alzheimer’s, Parkinson’s, schizophrenia. Unlike all these disorders, and thanks to Dr. Zoghbi, we have a gene, we have great animal models, we know that Rett is not degenerative, we have reversibility, and we have multiple approaches being pursued for cures and treatments.

The Chan Zuckerberg Initiative is certainly important in the long-term view of preventing and curing disease. I applaud them for their generosity and their bold vision. But it’s imperative that RSRT and all of us continue building on the momentum of Rett-specific research that’s on a much tighter timeframe—a cure for our children as soon as possible. More than ever, it’s within the power of the Rett community to move us towards that cure by getting involved with us and fundraising for the research.