An Update on the BRAIN Initiative

erobin.jpgA year or so after President Obama personally announced his signature initiative to create a public-private partnership to improve our understanding of the infrastructure of the human brain, the White House convened 250 of us to hear a report card and plans on progress to date.

I was invited — wearing my two hats as President of the Parkinson’s Disease Foundation and Chair of the American Brain Coalition — to attend the September 30 meeting, along with other leaders of the multi-million dollar effort, including those from the National Institutes of Health (NIH) neurology and mental health institutes, neuroscientists, industry reps, professional organizations and lay research advocates.

Partnerships In Science and Funding
The underlying mantra of the two and a half hour meeting was clear and repeated in one way or another by virtually all of the speakers: the importance of creating partnerships and integration in the approaches we take to understanding brain disorders.

This means, among other things, reaching across disease states (e.g., Parkinson’s and Alzheimer’s); linking the energies of different professions (e.g., neuroscience and engineering); and creating partnerships among the three great financial engines of scientific and technological change (government, industry and private philanthropy).

We were told by one of the White House coordinators that the Obama team has lined up more than $300 million in investments to date, including an initial $100 million from three federal agencies (NIH, the National Science Foundation and the Department of Defense) and $270 million from patient advocacy organizations, foundations and academic institutions and technology companies.

What (or Who) Was Missing?
The picture was far from complete, and in some important respects seemed a bit heavier on hope (and more than a dash of hype) than solid, novel accomplishments.

For one thing, it was disappointing to many of us that only a few of the industry leaders were included on the panels (or even in the auditorium).

For another, it was notable that patient-advocacy groups and patient advocates themselves— apart from my own organizations and a couple of others (e.g., the Parkinson’s Action Network, represented by Ted Thompson, its new CEO, and the Multiple Sclerosis Society) — were not represented or recognized at the level that many of us think is necessary.

These stakeholders must be included if the brain science movement is to receive the popular support that is required to be successful.

Looking Ahead
I left the White House feeling encouraged that the President is asking the right questions — and fired up with new commitment to using PDF’s passion, connections and resources to help chase down the answers.

One thought on “An Update on the BRAIN Initiative

  1. Peggy Willocks

    Robin
    I feel confident that your perspective of the recent meeting at the White House on an update of The Obama team’s Brain Initiative was completely on target. Thank you for noting the absence of the single most important stakeholder – the patient, whether it be Parkinson’s, ALS, or Alzheimer’s. As you reported, the initiative has already set aside $300 million toward this effort, but that seems trite when the economic burden of Parkinson’s disease alone in the U.S. Is estimated to be $14.4 billion ( that’s with a “b”) per year, and the prevalence of people diagnosed with Parkinson’s is expected to double by 2040. Looks as if the creative juices are needed from industry, the private sector, national disease organizations, and patient- advocacy groups. It is the responsibility of the latter group to make the President and his initiative appointees aware of just how huge this problem is. If you need more volunteers in your ” cabinet” as leader of the American Brain Coalition, I know where you can find those who care about this effort the most – that is the person with the neurological illness and his/ her caregiver.

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