Now Approaching Boston

ffb_main_logoThis past weekend I spent a good portion of the day at a visions seminar hosted by the Foundation Fighting Blindness.  It was not until I received a text from Beth that I realized that exactly one year prior was when we found out that Rebecca would eventually go blind.  Before that day I would not have known that there was a seminar in Boston where researchers and scientists were leading efforts to fight this disease.  I would not have known how close we are to finding a cure had Rebecca not been diagnosed with Usher Syndrome.  Prior to knowing about Rebecca’s diagnosis of Usher Syndrome and ultimately the fact that it comes with an inherited retinal disease, I would have probably spent my day differently, but with the direction that life is leading us I could not imagine spending it anywhere else.


One of the things that I hear in these seminars is how close we are to a cure.  There is always discussion about the latest clinical trials, some new advanced delivery system to enable large genes to be delivered to the retina, and a whole lot of talk with respect to the structure of the eye and inherited retinal diseases affect on vision.  It’s all truly interesting stuff and very scientific.  I could write pages about the treatments such as gene therapy and stem cell therapy, delivery systems such as nano-particles and viral vectors, and the latest methods being explored to help rebuild photo receptors within the retina using algae cells.  I could write about all those things, I won’t claim that I fully understand it all but I do pick up on most of it, especially the more I am exposed to it.  I could bore you with the details but it would make for a fairly boring read.  There is one thing however that I always get from these seminars and that is further confirmation that we are really close to a cure.

I have heard a similar analogy which aims to express how close we truly are once in Chicago and now here in Boston.  In Chicago it was delivered by Dr Edwin Stone at the Wynn institute for vision at the University of Iowa and this time by Martha Steele, a deaf/blind adult with Usher syndrome who Beth and I have met on a couple of occasions.

The analogy changes slightly based on geographic location and it was explained a bit different by each of them so I will put my own spin on it as well.  It goes something like this:

First imagine you are about to embark on a road trip from San Jose CA to Boston MA.  The first thought you may have is that it is going to be one long trip!  Now think of the progress that has been made in the decades to curing inherited retinal diseases that organizations like the Foundation Fighting Blindness have been funding and keep this in mind.  So let’s say the road trip journey begins and there is no way you are turning back but along the way you will hit some roadblocks, the car might break down, you may run into seemingly insurmountable obstacles but you are determined to get there.  At the beginning of this journey lets say that you had no spare tire but you got a flat 25 miles into it.  Naturally on the next leg of the journey you would probably have a spare tire in the trunk so that you were better prepared the next time you got a flat.  You continue to learn and develop many tools and resources to help you better navigate the obstacles as they arise.  Eventually the miles pass and the journey gets a little easier because you have amassed a tool kit of these resources.  Now lets say you are 25 miles6937626-boston-skyline away from Boston and the final leg of the journey is almost complete but up ahead there is a traffic jam and it shows no signs of clearing.  If this happened 25 miles out from San Jose our options would be limited to waiting, but now that we can see the city lights in our windshield our choices have expanded.  Now instead of waiting we can get out of the car and walk the remaining distance.  The point is we can get there from here, it may rain a bit on the way, there may be other obstacles, but we are close enough that there is nothing stopping us from getting to Boston.  Similar to our theoretical road trip the Foundation Fighting Blindness has been on this journey for a while now and along the way they have picked up valuable resources and navigated the once impassable obstacles.  They started with nothing more than a desire to help cure this disease then funded research that eventually led to two clinical trials ten years ago, juxtaposed to today where they are helping fund research in over twenty inherited retinal diseases clinical trials.

This past year has gone by so fast, but we have learned so much.  We have grown stronger and wiser, and we can see the city lights in the distance.

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