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The Importance of Titles

September 17, 2009

By Mark Dunning, Da.D.

It's been great having Jennifer contribute to the blog. I'm not a Ph.D. so I don't have the same perspective on the process that she brings. I've been thinking a lot about those letters lately: Ph.D. See I'm just a Da.D. and I often wonder what in the world makes me qualified to talk to anyone about Usher syndrome. 

I have no formal training in ophthalmology or otolaryngology. I can hardly even spell them. Until Jennifer's post last week I knew next to nothing about the difference between basic, transitional, and clinical research. I didn't know about any controversy at NIH. And despite desperate attempts by some top notch professors and doctors to teach me, I'm still a neophyte when it comes to genetics and molecular biology. I'm neither a therapist nor an educator. In fact, I am so desperately unqualified that I often feel ill-equipped to even observe conversations between researchers.

But the truth is that we, you and I, hold the truly important titles. Being a Da.D. or an Mo.m. or having Us.h. makes you the unquestioned expert on Usher syndrome. Folks like Jennifer, thankfully, spends 8-10 hours a day every week day working on Usher syndrome. You spend 24 hours a day living with it. A Ph.D. might spend a decade working toward a degree. A researcher might spend thirty years of his or her life investigating it. But in the case of a person with Usher, you have never taken a breath without it. Not a single heart beat. No researcher can say that.

More importantly, you already have answers to questions that researchers desperately want to know. It is a fact that even people with the same genetic mutation have different rates of vision loss. We know that much to be true. What we don't know is why. It might very well be environmental. A certain level of light exposure, maybe, or dietary preferences or certain medications you take or some weird combination of things. But something is causing people with the same mutation to lose their vision at sometimes wildly varied rates and you hold that answer.

Jennifer wrote last week about the length of time it takes science to get from the bench to a treatment. It is very hard to find the one needle in a stack of needles that is the beginnings of a cure. Normal scientific process is to take each needle from the stack, one by one, test it and discard those that don't hold promise. Eventually you come across the right needle, but clearly that process takes a lot of time.

But there are ways to speed up that process. There are literally thousands of compounds that might help slow the vision loss or present a cure. The needle method is to test every one, one at a time until we find one that works. However if we can find every Usher patient and learn their natural history; when their night vision problems started, their rate of vision loss, their lifestyle, their diet, etc, we can narrow that search. If we know, for instance, that everyone who eats Doritos and likes to square dance has a slower rate of vision loss than the average Usher patient, we at know where to start looking. We might not know why the combination of Doritos and square dancing help, but we're able to dramatically shrink that pile of needles that folks like Jennifer have to sort through. Now instead of every compound, they can focus on just those that make up Doritos and those generated by square dancing.

(By the way, before you go on the Dorito diet and start taking square dancing lessons, please realize that I completely made that up. I can just imagine a hundred families wearing checkered skirts and bandanas with bright orange fingers and lips at our next family conference.)

So, again, the pace of scientific progress can be disheartening and can feel very distant. It shouldn't. Usher patients and their families can absolutely effect the rate of discovery and they're involvement in the process is the most critical component. 

Don't feel unimportant. Stay involved. Mo.m.s and Da.d.s and, most of all, Us.h. are the most valuable titles of all.

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