The Beginnings of a Long-term, Long-distance Relationship
It is difficult for me to write about the research being done by the Juvenile Diabetes Research Foundation and others like them. This is partly because of the science involved and the fact that I have not yet fully educated myself on the terms and studies being done to cure and treat diabetes. To pretend to know what I mean when I say the community is working hard to use anti-CD3 therapies to preserve the function of beta cell insulin production in newly diagnosed cases would be a disservice to myself as a writer and to you as a reader. I don’t have any idea what it means or what it involves. Writing about research is difficult also because when I write I try my best to look at the words I use as if it is the first time I am seeing them. That way, the emotion in them is fresh and visible, and hopefully it is that way too for you when you read them.
Diabetes, however, is a disease with a history, and as such is no easy thing to write about. With history comes eyewitness accounts, expectations, and above all else, context. All of these are things that can derail good writing, but context especially can ruin the results. For instance, within the same year that insulin was discovered, explorers uncovered King Tut’s tomb in Egypt. Since then, science has revealed that the young Egyptian pharaoh died as a result of a leg injury and a bout of malaria, not of murder as was long suspected. The discovery of insulin, therefore, taken in the context of this shared history with a mummified king seems to have fallen far short of its potential. How is it researchers can unmask the cause of death of a three thousand year old boy-king, and not unlock the secrets that will rid the world of diabetes?
I don’t know, but fortunately there are others stepping up to explain it. One of those is John Brady, a chairperson and member of the international board of JDRF. I recently had the opportunity to meet and listen to John speak at a research update hosted by my local chapter.
The event was sparsely attended, a result perhaps of a plethora of same information easily pulled from the web and not from a lack of interest in the subject matter. I suspect many are like me, armed with only inspiration, and not proven scientific knowledge. Certainly, with a population of nearly one million in the region in which I live there is no shortage of diabetes patients or caregivers. Nonetheless, if the dozen of others like me in attendance of the one hour debrief is indicative of the other two sessions there is, it might suggest, a dearth of interest in face-to-face communication. Sadly, that’s to be expected: where the internet gains in information sharing it loses in direct personal involvement. Let’s hope that the spirit for receiving such news has not dampened amongst its strongest supporters and those who would benefit the most and that the slight turnout was a matter of timing and inconvenience.
That said, I found the update to be both reassuring and a tad bit troubling. First, the work being done is astonishing. I can only hope that it translates into something useful and concrete in terms of a cure for my daughter’s diabetes. But listening to Mr. Brady speak I could see how someone who is familiar with the history of the disease and has been around diabetes for a long while could grow weary of all the pledges. It’s like telling your kid you’ll play catch with them but never getting past the front door. A promise is not the same thing as action, and eventually, the kid will quit asking.
Mr. Brady prefaced his discussion with the comment that JDRF changed its strategy in 2004 and moved from a position of passive funding to one of active management. This was necessary, he claimed, in accelerating the discovery, development and delivery of a cure. The preceding environment was apparent. Throughout his talk, he referenced still-inconclusive studies that had been decades in the making. Though exceptional in both terms of treatment and cure, such lengthy trials with no immediate plans to bring to market don’t sound exactly promising to the father of a newly diagnosed child. They were needed available yesterday.
But as even as the scientists working on an ancient murder case discovered: yesterday’s not everything it seems. It’s tomorrow that’s often the torch bearer of better and brighter news.
