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Living with a Brain Disorder Project Launched by the Global Neuroscience Initiative Foundation

-0-4--2009 08: 1

Living with a Brain Disorder is a project officially launched by the Global Neuroscience Initiative Foundation (GNIF) this year. GNIF is a non-profit organization dedicated to providing open-access information about neurological and psychological health. GNIF aims to gather information about brain disorders beyond that normally available through medical sources. Qualified volunteers will interview individuals suffering from a variety of brain disorders, including Alzheimer’s disease, Parkinson’s disease, bipolar disorder, schizophrenia, and autism.

The purpose of the interviews is to solicit information about interviewees’ perception of their illnesses, treatments they have received, and physical, social, and emotional effects. The project results are going to allow the GNIF researchers to draw conclusions about the various brain disorders and the socio-geographical etiologies, the impact of stigmatization on sufferers, and the accessibility of related medical information and treatment.

GNIF Director Shaheen Lakhan says of the importance of the project, "It is essential for the world to see how people with brain disorders truly feel, to reveal the impact of brain disorder stigmatization, and to explicate the varying roots of stigmatization. Only if we present our information via a wide variety of mediums in many languages will we reach and educate a global audience. "

One of the primary purposes of the Living with a Brain Disorder Project is to combat the stigmatization faced by millions of individuals having mental disorders worldwide. Stigmatization of the mentally ill, which has been noted and studied by researchers in disciplines ranging from sociology to psychopharmacology, not only impedes mentally ill individuals’ integration into society, but can also lead them to avoid seeking medical treatment or to terminate treatment prematurely.

Seattle Central College faculty instructor Christine Loftus reports that stigmatization creates a "vicious cycle" by exacerbating the mental illness that led to it. Strikingly, GNIF has found that such stigmatization is not solely the product of ignorance; health-care professionals themselves often exhibit stigmatizing behaviors, inducing a serious mistrust of medical providers by the mentally ill population.

However, the Neuroscience Initiative is based on the principle that in general, less stigmatization will be exhibited by people who are educated about brain disorders and who therefore understand that these illnesses are not the fault of afflicted individuals. In presenting data from the Living with a Brain Disorder Project, GNIF aims to dispel the common myths that lead to misperceptions of mental disorders. At the same time, however, the role of genetics in brain disorders won’t be overemphasized, as preliminary research has suggested that such an emphasis leads some to conclude incorrectly that mentally ill individuals are "inherently flawed.”

The Director of the Living with a Brain Disorder Project is Vartika Mutha, MA. Mutha is going to work in coordination with Initiative Director Lakhan as well as other psychologists and medical professionals to develop a standard interview questionnaire and to recruit qualified volunteer interviewers and interviewees. GNIF and the National Coalition of Students with Disabilities ( have already identified a large number of potential interviewees and hope to engage the resources of the United Nations, government and educational agencies, and non-governmental organizations to find volunteers worldwide.

Volunteer interviewers will be prepared by Mutha to conduct a series of semi-structured interviews online and in person. The results from these interviews, plus professional commentary, are to be immediately available online through the project website designed pro bono by Frank Voorburg of Feaser and expert programming by Richard Kern of System DC.

Researchers at GNIF can then perform statistical analyses based on quantifiable data gathered during the interviews. Their results are going to appear in open-access publications including the Initiative’s own journal, Brain Sciences & Neuropsychiatry, and other scientific journals. Ultimately, the researchers’ psychological, sociological, geographical, medical, and economic evaluations of the data will aid in the development of the Initiative’s anti-stigmatization and educational campaigns and their programs to improve access to mental health care worldwide.

The Global Neuroscience Initiative Foundation is currently seeking interviewers who are capable of respectfully interviewing individuals having neurological and/or psychiatric brain disorders. Interviewers can expect to have the full guidance and support of the Project Director and the administration. GNIF is also seeking individuals who have neurological or mental disorders to serve as interviewees, as well as mental health professionals to provide commentary. Interviewees may be interviewed in person or via telephone, or may answer interview questions online.

If you are interested in volunteering for any of the above positions, please fill-out the Volunteer Sign-Up form.