Tiffany Jones-Smith’s Thoughts about the KPMP
The nine family members I have lost to CKD did not die in vain. As a patient advocate, I understand the brevity of life. A longitudinal study is long-term, 15 years or more. KPMP scientists are obtaining voluntary research biopsies from current patients in order to create better options for future patients. Teams of scientists from multiple disciplines are working together; I nicknamed them the Kidney Calvary.
After taking it all in the first day I certainly didn’t understand everything, but I understood enough. I knew that I was sitting with a group of scientists who were about to make history. I went back to my room and cried.
In my family kidney disease has been devastating. It was indescribably difficult to watch the toll that it took on the lives of my family members. One-after-another I watched the disease take their joy, their health, and eventually their lives. Each going from being gregarious and full of life to simply existing.
Darrell is the catalyst that caused me to become a voice for patients. I couldn’t watch this happen to him or anyone else without a knock-down-drag-out fight. The Kidney Calvary are the strongest warriors we have in this fight. They are dedicating years of their lives to this longitudinal study. Thoughtfully, they are making an effort to include patient input in every phase and aspect of the study.