Wendy Aron

Sounds Awful

Why My Brain Wasn’t Accepted by Stanford

What to do if you're an orphan

Posted Jun 05, 2013

After an exhaustive search, I thought I had found the Rosetta Stone in the Stanford School of Medicine’s Center for Interdisciplinary Brain Sciences Research.

 

In the “About Us” section, it says the CIBSR is dedicated to “improving the lives and well-being of individuals with disorders of the brain …and developing new treatments for neurodevelopmental, neurogenetic and neuropsychiatric disorders of childhood onset.”

 

Of course, I thought to myself, the fine people at Stanford will be able to unravel the mysteries of misophonia. But when I contacted the director of the CIBSR, Dr. Allan Reiss, with a long, hopeful list of questions, he wrote back: “Really not my area of expertise. Sorry about that.”

 

I couldn’t get anywhere with Harvard’s Center for Brain Science either, so I started to wonder just what in the name of Santiago Ramón y Cajal was going on. Why were the major research institutions failing to show misophonia the type of love that could lead to heightened public awareness of our condition?

 

I took my questions to The Neuroskeptic, a neuroscientist who blogs anonymously so that he can be open about what’s going on in his field.

 

“I would suggest that researchers don't study misophonia mainly because they don't know much about it, or haven't heard of it (I try to keep up with these topics and I only heard about it a few months ago!)” he said via email.

 

Generally, The Neuroskpetic told me, research initiatives begin when an individual neuroscientist or team of neuroscientists at a major institution apply for government grant money. “People apply for what they want, but always with considerations as to whether it'll get funded,” he said. “However that's more to do with HOW you pitch your application -- if you make a good enough case, you could get most topics funded.”

 

The Neurosckeptic also told me that researchers go to the pharmaceutical companies when it’s a question of investigating a new drug, or a new use for a drug already on the market. Sometimes, but rarely, funding is provided by non-profits that raise money from private donors. This usually only occurs with disorders that are so well-known (Autism comes to mind), that they have essentially become brands.

 

So, fellow misophonics, it’s all up to us. Take all of that pent up steam from listening to a cubicle-mate furiously tapping on her keyboard, and use it to send a clear message to Allan Reiss and the rest of the research staff at the Stanford School of Medicine’s Center for Interdisciplinary Brain Sciences Research that misophonia deserves some attention.

 

Then, take this list of medical school web sites, and start harassing the professors of cognitive neurology, neuropsychiatry, and all related disciplines to do research on misophonia. Support your arguments with links to articles and TV show segments, so that there can be no doubt that this is a legitimate disorder.

 

I’m not saying this is going to be easy-- the budget for the National Institute of Health was recently shaved by 5.1 percent due to the budget shenanigans in Congress this past spring-- but it’s the only way we’re going to get our brains into Stanford.