I decided to become more proactive and less secretive about PKD for several reasons. One, I lost a cousin, like a brother to me, to PKD. He was a gifted musician and recording artist with his band The Tradewinds. My cousin's last words to me were 'Tell them about PKD.' In 2004, after my cousin's death, I decided to participate in the Walk for PKD and I formed the Two Red Roses Team in honor of my cousin and his most famous song 'Two Red Roses.' Secondly, I discovered that PKD recieved less funding than less prevalent diseases. Thirdly, and most important, finding a PKD treatment and cure became my life mission when my only child (she's now in her 20s) was diagnosed with PKD.
PKD has been in my family for 100+ years and four generations. I participate with the PKD Foundation to remember the seven family members I lost to PKD, to honor the 15+ family members (most are afraid to be tested) living with PKD and to make sure that the fifth generation of our family never knows the full affects of PKD.