Juvenile Idiopathic Arthritis
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.” My eldest daughter was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis (SoJIA – originally called Juvenile Rheumatoid Arthritis, or JRA) when she was 15 months old, which also happened to be about six months into the start of my old Consulting company and in the middle of a very critical Y2K ERP system upgrade and rehosting project. It was definitely a challenging time in my life.
At that time there was very little research on JRA because it was estimated there were only 30,000 children affected by the disease and the implication was that funding research would not have a positive ROI. As an aside, this was also a few years before the breakthroughs of biological medicines like Enbrel for use on children.
One of the things that I learned was that this disease could be horribly debilitating. Children often had physical deformities as a result of this disease. Even worse, the systemic type that my daughter has could result in premature death. As a first-time parent it was extremely difficult to imagine that type of life for your child.
Luckily, the company that I had just started was taking off so I decided to finds ways to personally make a tangible difference for all children with this disease. We decided to take 50% of our net profits and use them to fund medical research. We had a goal of funding $1 million in research and finding a cure for Juvenile Arthritis within the next 5-7 years.
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 was passionate, knowledgeable, and successful in her field who showed me a different and better approach (here’s a post that describes that in more detail).
I no longer wanted to blindly give money and hope that it was used quickly and properly. Rather, I wanted to treat these donations like investments in a near-term cure. In order to be successful, I needed to understand research from both medical and scientific perspectives in these areas. That began a new journey of research and independent learning in completely new areas.
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, the other members 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 new analytics products could be useful in this space).
There are efforts going on today with custom, personalized medicines that target only specific genes for a very specific outcome. The genetic modifications being performed on plants today will likely be performed on humans in the near future (I would guess within 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 long-term. But, that day will come.
It’s not a huge leap to go from genetically modified “treatment cells” to true nanotechnology (and not just extremely small particles). Just think, machines that can be designed to work independently within us, do what they are programmed to do, and more importantly identify and understand adaptations (i.e., artificial intelligence) as they occur and alter their approach and treatment plan accordingly. To me, this is extremely exciting. It’s not that I want to live to be 100+ years old – 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.
My advice is to always continue learning, keep an open mind, and see what you can personally do to make a difference. You will never know unless you try.
Note: Updated to fix and remove dead links.