Perhaps this signals that I have finally learned to cherish what I have?
A strange thing happened to me yesterday.
When I was a young man, freshly diagnosed, I was full of vinegar, keen to learn the science and seek out potential cures. Not snake oil, oh no. There plenty of these salespeople to be had. This was not it. I wanted science-based answers.
Sadly, there really was not much going on. I found myself sadly disappointed in my own industry, that would be the Pharmaceutical/Biotechnology industrial complex. There was just nothing going on; no commercial interest in X-ALD or AMN.
Nonetheless, whenever the Kennedy-Krieger Institute was looking to enroll for anything, I was down for it. While I may have helped the science grow, no cures appeared from these efforts.
Things change. I got old, and further progressed in my disease. But as I learned yesterday, my thinking had also evolved. Here is how:
Interest in rare and neglected disease, even X-ALD…
View original post 342 more words