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While getting a physical so I could row crew as a college freshman, I learned that in addition to some height and intelligence, I had also inherited polycystic kidney disease (PKD) from my late father. Looking out my dorm window, I wondered why the passersby could anticipate long, full lives, while my own life might already be half over. At the time I knew of just one person with PKD who had made it to the age of 50, and she had barely made it that far. Other male relatives with PKD had died in their mid-forties. There was no treatment on the horizon. I wondered whether I should ever pursue a long-term career, get married, or have children.
Nineteen years later I heard of an experimental treatment that could change the future of the 12.5 million people with PKD. I started taking Tolvaptan in 2005, as part of a study run by Otsuka Pharmaceutical, and I still take it twice a day. Currently, Tolvaptan is approved for PKD patients in Japan, Canada, and the European Union, but has not yet been approved in the United States. Just the prospect of a successful treatment changed my life. Today I'm very happily married, with three young daughters.
However, PKD has given me a great deal of sadness, including the loss of my first cousin Mike when he was just 35, and later of his dad, my Uncle Dick, at 64. My cousin Mike and I were the same age, and we more or less grew up together - fishing, playing baseball, sneaking into movies. Shortly after he died, I vowed that I would do whatever I could to help bring about a cure. For many years I had been relatively quiet about my PKD. Few of my friends knew I had it, and I certainly didn't tell employers. After Mike's death, I realized that remaining quiet would not keep my siblings or my cousins or me safe.
So I got loud. I started visiting my congresspeople to make sure they understood the importance and prevalence of PKD. I told everyone I could think of that I had this disease; many of them are now helping me fight it. I dress up in a kidney costume, which helps me raise more than $10,000 per year for the PKD Foundation, because - well, who wouldn't give a little more to a grown man who walks a few miles in public dressed as a kidney? I have been honored to serve on the all-volunteer board of the PKD Foundation for the past six years. Going public with my PKD has enabled me to make a greater contribution toward its cure.
It was my friends at the Foundation who told me about the Department of Defense Peer Reviewed Medical Research Program (PRMRP), and I've been thrilled to serve as a consumer reviewer in the area of PKD for the past two years. These programs strengthen one's trust in the power of a good government to help its people.
I wish I could personally thank, face-to-face, the people who conceived of the PRMRP. At the very least, I can thank the CDMRP staff for all their hard work in making everything run smoothly. My father was proud to have served four years in the Air Force before learning that he had PKD. He could never have imagined that his non-scientist civilian son would one day review PKD research applications for their impact on America's military readiness - or that such reviews, conducted alongside scientists, would lead the DoD to commit millions of dollars to innovative basic research. This research will one day make an enormous and lasting difference to families like ours.