NAMI HelpLine

July 23, 2014

Today I was fortunate to be on a panel to discuss the findings of a major piece of work published in Nature and the unprecedented $650 million dollar gift from Ted Stanley to the Broad Institute to further this type of work. The event was a celebration of Mr. Stanley’s game changing vision and commitment to research in the underlying biology of psychiatric illnesses, and a call to action for more progress in this crucial area. I represented the perspective of NAMI and our urgent need for better treatment options.

The event was held at the Broad Institute in the heart of the MIT campus, which has become a hotbed of bioscience innovation and research. The Broad institute itself is bright and open, and conveys a sense of possibility. This was once a scruffy neighborhood and it was remarkable to experience the new energy flowing here. The Kendall Square area, at the center of the MIT campus, has been transformed by the influx of scientists and industry. This gift will continue to attract the best minds to continue the remarkable research momentum and help fill a critical need when funding from the U.S. government is uncertain.

The study compared the genomes of more than 37,000 people living with schizophrenia and compared their genes to people who do not live with the condition. The riddle that is the gene component to schizophrenia has vexed many but now the evidence base is rapidly expanding. Sorting out an enormous number of puzzle pieces and making patterns of them is the work of complex genetic assessment. The study identified 108 key genes (83 of which have not been previously linked to schizophrenia) in this analysis and the Broad Institute will do a deep dive of each of them. This study is only the first step; one of the lead scientists told me more papers are in press and will be coming out later this year.

I have invited the lead scientists to our national convention in San Francisco in 2015 to share their insights to our community. Steve Hyman, the director of the Stanley Institute for Psychiatric Research at the Broad Institute of MIT and Harvard and former director of the NIMH has emphasized an open source philosophy. This means that all the data sets will be shared with researchers from across the world. This approach will clearly advance the field faster. This is an advance in scientific culture as well as neuroscience.

In my work as a psychiatrist at the Prevention and Recovery from Early Psychosis (PREP) clinic I say “I don’t know” a great deal. My young patients and their families ask me, what caused these voices? How does the medication work exactly? Will reducing my medication after 3 years of no symptoms be a big risk to my recovery? For these and many other questions I offer my best understanding from the imperfect literature, and our theoretical understandings. For many of these questions we simply don’t have the building blocks we need. We simply need to learn more so better shared decisions can be made. My patients and families deserve better understanding to deal with symptoms that have so powerfully impacted their lives.

Patience and humility are of course key themes in this kind of basic science research. The researchers are humbled to say that they cannot promise a quick return, yet carry clarity of purpose: cancer was once a scary and seemingly unknowable illness that has very few treatments. Today because of better knowledge of the underlying science, there are new options being developed on a regular basis in the field of oncology.  This gift and this culture change and this line of inquiry will hopefully yield similar results in our field.

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