Science has been interesting to me for most of my lifetime, but it wasn’t until my first child was born that I shifted from “interested” to “involved.” You see, my daughter was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis (SoJIA – originally called Juvenile Rheumatoid Arthritis, or JRA). As I wrote it a brochure, this was a big name for such a little girl. She was only 15 months old at the time, and there was very little research on the topic back then. This was also a time a few years before the breakthroughs of biological medicines like Enbrel were being used on children.
One of the things that I found is that this disease could be horribly debilitating. Children often had physical deformities as a result of this disease. As a first time parent difficult to imagine that life for your child. Luckily, I had just started a company and it was starting to be successful, so I decided to finds ways to personally make a tangible difference.
As someone new to “major gifts” and philanthropy I quickly learned that some forms of gifts were more beneficial than others. While most organizations wanted you to start a fund (which we did), the impact from that tended to be more long-term and less immediate. I met someone who showed me a different and better way (here’s a post that describes that in more detail).
I didn’t want to blindly give money. Rather, I wanted to treat these donations like investments. In order to be successful I needed to understand some of the medicine and some of the science in these areas. That started a new era of independent learning in my life.
There was a lot going on in the fields of Genetics and Genomics at the time (here’s a good explanation of the difference between the two). My interest and efforts in this area led to a position on the Medical and Scientific Advisory Committee with the Arthritis Foundation. With the exception of me, these were talented and successful physicians who were also involved with medical research. We met quarterly, and I did ask questions and make suggestions that made a difference. But, unlike everyone else on the committee, I needed to study and prepare for 40+ hours for each call to ensure that had enough of an understanding to add value and not be a distraction.
A few years later we did work for a Nanotechnology company (more info here for those interested). The Chief Scientist wasn’t that interested in explaining what they did until I described some of our research projects on gene expression. He then went into great detail about what they were doing and how he believed it would change what we do in the future. I saw that and agreed, but also started thinking of the potential for leveraging nanotechnology with medicine.
I was listening to the “TED Radio Hour” while driving today and heard a segment about entrepreneur Richard Resnick. It was exciting because it got me thinking about this again, and this is a topic that I haven’t thought about much for the past few years (the last time was contemplating how Actian’s analytic products could be useful in this space).
There are efforts going on today with custom medicines that target specific genes. The genetic modifications being performed on plants today will be performed on humans in the near future (I would guess 10-15 years). The body is an incredibly adaptive organism, so it will be very challenging to implement anything that is consistently safe and effective. But, that day will come, and many people will be upset when it finally does.
It’s not a huge leap to go from genetically modified “treatment cells” to nanotechnology. Just think, machines that can work independently within is, do what they are programmed to do, and more importantly identify adaptations as they occur and alter their approach accordingly. To me, this is extremely exciting. It’s not that I want to live to be 100 – because I don’t. But, being able to do things that have a positive impact on the quality of life for children and their families is a worthy goal from my perspective.
Keep learning, keep an open mind, and see what you can personally do to make a difference. You will never know unless you try.