Search This Blog

Friday, October 29, 2010

Family Activism and MIND

Chuck Gardner writes at The Sacramento Business Journal about the origins of the MIND Institute. Like so many families, they started with worries that a pediatrician could not resolve:

Eventually, we found our way to a specialist in San Francisco and learned our son had a disorder called autism. We were told to go find a nice institution for our son and move on with our lives. Instead, on the trip home, we vowed to exhaust every avenue to find out what the proverbial “they” were doing to treat and cure autism.

We discovered there was no “they” for autism and further, there was no medical treatment, no cure. In fact, autism was considered to be such an impenetrable disorder that it received little funding from the National Institutes of Health, and thereby little attention from the research community.

Two years later, we came together with four other Sacramento families who believed that with a focused scientific effort, we could begin to see into the core biology that underlies autism. Our vision was to create a place where families, researchers, clinicians and educators would partner to mount an unprecedented effort to prevent, treat and cure autism and related disorders. We wanted families like ours to know there was a “they.”

Today there is a “they,” and thanks to the University of California Davis, it is the world-renowned MIND Institute. The team at the MIND Institute is achieving the vision set by the families by making the most significant discoveries in the history of autism and another poorly understood developmental disorder, fragile X syndrome.

When we approached UC Davis with our vision, we found a university that was not only open-minded but willing to take a risk that a few highly motivated families could deliver on that vision. With a “Field of Dreams” spirit, UC Davis built the MIND Institute and “they” came: researchers, clinicians and educators. All are focused on preventing, treating and ultimately curing autism and related disorders.

See here for an April 2006 article by Gary Delsohn providing more detail on MIND's origins.