My mother died from PKD complications at 61, after having two kidney transplants. Her kidneys failed around age 50, and she had a very rough decade after that. She was constantly in and out of the hospital. I was in my 20s, and it was very hard to watch her suffer. I definitely realized that neither dialysis nor transplantation is a “cure” for PKD. During that time, also I found out I had inherited PKD.
My parents were PKD Foundation donors, and after my mom died, I became involved as a volunteer, and later joined the Board of Trustees, eventually serving as vice chair and chair.
Until I got involved in the PKD Foundation, I didn’t know anyone else with PKD except myself and my mom. Through the Walk for PKD, the National Convention, and other Foundation events, I met many people who have PKD or have it in their family. It was a very powerful experience to meet others living with PKD—and either doing well, which was inspirational, or doing poorly, which was motivating.
I give to the PKD Foundation because I want to help the scientific community find an effective treatment. This disease causes a lot of suffering. Dialysis and transplantation work for some, but they are not great options for everyone. I give for myself, my family, and all PKD patients, so that we can find ways to limit the harms of this disease.
I know I am making a difference by giving to the Foundation. In 2000 when my mom died, there were no clinical studies for PKD. I myself am in the tolvaptan trial right now, and in the last decade there have been dozens of clinical studies related to PKD. The PKD Foundation plays a critical role in moving this science forward. I hope people recognize the progress the Foundation has made and the role it has played in putting this disease on the map. That is why I make giving to the PKD Foundation a priority.
