Juvenile Rheumatoid Arthritis
Genetics, Genomics, Nanotechnology, and more
Science has interested me for most of my life, 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 Consulting company, all while we were in the middle of a very critical Y2K ERP system upgrade and rehosting project. It was definitely a challenging time in my life.
At the time, there was very little research on JRA because it was estimated that only 30,000 children were affected by the disease, and the implication was that funding research would not have a positive ROI. The economics of medical research were eye-opening to me. This was also a few years before breakthroughs like Enbrel for 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, imagining that type of life for your child was extremely difficult.
Luckily, the company I had just started was taking off, so I decided to find ways to make a tangible difference for all children with this disease. We decided to donate 50% of our net profits to fund medical research. We aimed to fund $1 million in research and find a cure for Juvenile Arthritis within the next 5-7 years.
As someone new to “major gifts” and philanthropy, I quickly learned that some gifting vehicles 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 passionate, knowledgeable, and successful in her field who showed me a different, better approach (here’s a post that describes it in more detail).
I no longer wanted to blindly give money and hope it was used quickly and properly. Rather, I wanted to treat these donations like investments in a near-term cure. To be successful, I needed to understand research from both medical and scientific perspectives in these areas. That began a new phase in medical research and an independent learning journey in areas where I had limited understanding and expertise.
A lot was happening in 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. Except for me, the other members were talented, successful physicians who were also involved in medical research. We met quarterly, and I asked questions and made 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 I had enough understanding to add value and not be a distraction. Every quarter, I earned my seat at that table.
A few years later, we did work for a Nanotechnology company (more info here for those interested). The Chief Scientist wasn’t 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. I also started thinking about the potential of leveraging nanotechnology in medicine.
While driving today, I was listening to the “TED Radio Hour” and heard a segment about entrepreneur Richard Resnick. It was exciting because it got me thinking about this again – a topic I haven’t thought about for the past few years (the last time, I was contemplating how new analytics products could be useful in this space).
There are efforts today with custom, personalized medicines that target only specific genes for a 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), and potentially misused as bioweapons. 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 from genetically modified “treatment cells” to true nanotechnology (not just extremely small particles). Just think, machines that can be designed to work independently within us to 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 based on changes and findings. 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 positively impact the quality of life for children and their families is a worthy goal from my perspective.
My advice is to keep learning, stay open-minded, and do what you can to make a difference. You will never know what is possible unless you try.
The People Who Move the Dial
Whether you are a business owner, a manager, or a parent, finding the right way to motivate your team is important to maximize performance and results. Each person is a little bit different and is looking for something a little different, and once you figure out what is important, you can help increase their impact. Not everyone wants to be a star – which is usually OK (as long as they have the right attitude, skills, and work ethic and add value).
Then there are those exceptional people who want to be the best, are willing to take risks, work hard, and “think differently” in order to succeed. These people are self-motivated and continue to raise the bar for the entire team as part of a high-performance culture. These are the people who move the dial.
I’ve had the pleasure of being taught by people like this, working with people like this, managing people like this, and helping a few become people like this. Occasionally, you have a few special people working together, which is when amazing things happen. These people are generally curious and wonder, “Why not?” They are confident (not arrogant), intelligent, and passionate about success.
Back when I was funding medical research projects, I had a trip scheduled to Philadelphia. I asked a friend at a local hospital to make an introduction to meet someone from “CHOP” (the Children’s Hospital of Philadelphia). They were ranked as a top hospital and research facility, and I wanted to learn why. She made the introduction, and we scheduled a lunch meeting. I was looking forward to the meeting but had no real expectations (other than being asked for money).
To my surprise, a half-dozen people in a large conference room with a catered lunch greeted me. They presented on their various projects (such disclosures were unusual, as they did not know me and, even riskier, knew I was involved with research projects at other facilities). Everyone in the room was amazing, and the department head (Dr. Terri Finkel) was one of the most impressive people I had ever met.
After lunch, I told Dr. Finkel I appreciated the lunch, but wondered why she went to so much trouble when I never promised to do anything in return. She smiled and replied, “We love what we do and love having the opportunity to talk about our projects and passions to people with similar interests.” That made a huge impression on me, and within a few months, we were funding projects using a unique new approach that Terri suggested. The approach was in response to my question about getting the most “bang for my research dollars” (thinking more like a businessperson than a researcher).
Over the next few years, this team did incredible things that had a tangible impact on Pediatric Rheumatology and the quality of life for children with Juvenile Arthritis. Many great researchers were involved, but two of them really stood out (Drs. Sandy Burnham and Randy Cron – both continue to do amazing things to this day). The results of this team were so much better than everyone else we supported. They provided a huge return on my investment, and I can take pride knowing that I made a difference through these efforts while helping launch their careers.
To me, it came back to the basics. Intelligent people who were passionate about making a difference, confident enough to be challenged, and led by a visionary person who saw an opportunity to motivate her team and help me achieve my goals. It’s the best type of win-win scenario possible.
These people moved the dial back then and continue to move it today. It is a thing of beauty to watch stars like this perform. These people shine twice as bright as they guide others toward success. And you can find them in every industry and every walk of life – you just need to look.
Where Ideas, Experiences, and Lessons Learned Intersect 