I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go to my Uncle Tony’s funeral in Washington DC this past month, which took my mindset to a completely different level – a mindset that took me a couple of weeks to put in its honored place. I loved my uncle. I did. He actually died at the end of last year and was cremated waiting for a spot at Arlington to become available. He was one of those individuals who seemed all rough and tough on the outside but was as soft as a marshmallow inside. He was not someone that was easy to get along with, but all myRead More →

On my radio show/podcast yesterday I tried… or, rather, attempted, to illustrate the genetics involving EB in a fun way, evoking the dormant (sleeping) recessive gene and wishing it could sleep more often. Alas, genetics are hard to explain. While after nearly 20 years I am on a weekly basis describing the blisters Nicky gets (and pictures do a much better job at that), explaining how he inherited the disorder when the parents do not have the condition it it’s still a challenge. That’s the thing with recessive genes. They are tricky. The most visual way to unravel the baffling of genetics is to find some other way to explain it in ways people can understand. We all inherit a gene from each parent for the same “thing” (eye color, bone structure etc) -the famous “pair” of 23 chromosomes we have in our DNA. One comes from dad, one from mom. Of course bothRead More →