Looking for Hope in the City of Angels
By Hakon Heimer
Los Angeles: the place for people with dreams, where a few succeed and many work in restaurants. Robin Cunningham and I flew to Los Angeles recently to join the dreamers: we dream of a world where disorders of the brain that affect thought and emotion are accorded the respect that other illnesses receive. Much of our first two days was spent at the annual meeting of the One Mind for Research Campaign, and we also visited with other advocates for people with mental illness in Los Angeles.
Soldiers as the vanguard against brain disorders
After a long morning of flying from Providence to Los Angeles, I met up with Robin just in time to dash to the opening afternoon session of the One Mind meeting. The new organization was conceived by founders Patrick Kennedy and Garen Staglin as the brain’s version of the American Heart Association, promoting basic neuroscience research as well as research on disorders “from autism to Alzheimer’s disease.”
Their initial goal is to convince the Pentagon that it should part with a small part of its massive research budget to help us understand and treat the signature brain injuries of recent wars–particularly traumatic brain injury, but also posttraumatic stress disorder. To that end, their first CEO is Gen. Peter Chiarelli, who recently retired from his post as vice chief of staff of the U.S. Army.
The talks that afternoon and the following days, which you can experience through the One Mind videos, provided a dizzying dash through the vast universe of research on the brain and brain disorders, from the challenges of stem cell research to the development of brain-machine interfaces for paralysis victims.
As far as I can tell from some of the talks at the meeting and early comments from One Mind’s leaders, they see their role initially in applying a combination of military process and business strategies to large-scale projects that function more like engineering projects than hypothesis or curiosity-driven research—e.g., big technology or biological sample gathering (for another perspective, see a report from the conference in the magazine Fast Company). If One Mind can bring significant resources to bear on these less sexy aspects of research, it will certainly free up other funding entities (e.g., the National Institutes of Health) to focus on smaller investigator-initiated brain research projects.
The civilian vanguard
What if you don’t have a famous name or wealth? Can you make any difference against a prejudice that seems insurmountable? I say, Yes! Take Elyn Saks as an example, though one might argue that she’s pretty famous now. She burst onto the scene in 2007, with the surprising news that a person with schizophrenia could be a tenured law professor, as recounted in her book “The Center Cannot Hold.” Robin and I joined Elyn and her husband Will for dinner on the night the conference ended. Our conversation ranged widely, from the mental illness stigma panel she had participated in at the One Mind meeting to her upcoming trip to Edinburgh for the TED Global conference (where her talk drew a standing ovation). A TED talk sure gets the word out about the potential of people with mental illness!
Need another example? How about Broadcast Thought? Three young forensic psychiatrists have combined their concern about mental illness stigma and their fascination with popular culture to create a consultancy that offers accurate information about mental illness to filmmakers and other influential creators. We enjoyed a stimulating Saturday morning breakfast conversation in Los Angeles with Broadcast Thought’s Eric Bender and Praveen Kambam, who were preparing for their upcoming presentations at Comic Con International in San Diego, July 12-15, the largest gathering of popular culture mavens in the world. Little could they know how relevant their panel discussion topic, “Unlocking Arkham: The Forensic Psychiatry of Batman’s Rogues’ Gallery” would be just a week later with the killings at a Batman premiere in Aurora, Colorado.
Robin and I then had the great pleasure to spend the afternoon with mental illness advocacy pioneers Patsy and Hal Hollister, and their daughter Meggin Hollister. Along with Connie and Steve Lieber, the Hollisters helped build a tiny nonprofit into the National Alliance for Research on Schizophrenia and Depression (NARSAD, now the Brain and Behavior Research Foundation), which collects money and donates it directly to scientists. But their contributions don’t end there–they have also maintained a steady involvement with the National Alliance on Mental Illness (NAMI) and founded NARSAD Artworks to promote art by people with mental illness. We hope to have more such conversations with the Hollisters as we seek to convene the different mental illness constituencies around the universally agreed-upon goal of more research.
That same night, I had dinner with Portia Iversen and Jon Shestak, who created the Cure Autism Now Foundation (later merged with Autism Speaks) in 1995 to accelerate research into autism. We would do well to emulate the energy and respect for science they brought to their cause, but also their willingness to critically question the experts when they seem too cautious or unfocused. One of their enduring achievements is the Autism Genetic Resource Exchange (AGRE) , the groundbreaking patient biobank and registry. I also happen to think that their “Cure Autism Now” bumper stickers were a brilliant strategy to claim the medical space and state clearly that autism is a brain disease, and not the result of bad parenting. Indeed, our Cure Alliance Mystery Letters campaign seeks the same respect for other mental disorders.