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Mission
It is my fervent hope that my family’s stories will bring attention to polycystic kidney disease (PKD) and the progress made in the world of dialysis and transplantation during my lifetime. I honor those who have lost their battle with PKD; they are some of the people I loved most. Their courage, faith and sense of humor taught me great lessons. Each of them contributed to where we are today. We have come so far in my lifetime, and yet we have far to go. I hope to inspire, encourage and, most of all, remind us to cherish life....
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About Suzanne
Suzanne Ruff comes from a family that has been plagued by kidney disease for generations. In her lifetime, she has lost her mother, several aunts and uncles and cousins to Polycystic Kidney Disease (PKD), the most common of all life-threatening genetic diseases. Both of her sisters inherited the disease. She did not. When her younger sister fell ill shortly after their mother’s death in 2003, Ruff decided to do something about it. She had always been afraid of doctors and needles, but says with God’s help she found the courage to save JoAnn’s life by donating a kidney. In the months leading up to the surgery, which took place on Oct. 19, 2004, Ruff spent a lot of time journaling, and published a book based on her notes and memories. Her hope is that The Reluctant Donor (Beaver’s Pond Press, April 2010, $14.95) will find its way into the hands of others who are facing a difficult life-and-death decision, and help them find the courage they need to get through it. Her family has been active with the Polycystic Kidney Disease Foundation since its founding days in 1982. The PKD Foundation is a source of information for newly diagnosed patients with PKD and helps fund research to find a cure. She is a member of AAKP, too. Suzanne is also a volunteer and speaker to raise awareness about organ donation and to fight to find a cure for polycystic kidney disease. She has volunteered for Translife, Lifeshare of the Carolinas and LifeSource, the non-profit organizations dedicated to saving lives through organ and tissue donation in the Upper Midwest, and a volunteer for the National Kidney Association (NKF). She is on the...
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About The Reluctant Donor
AN EXCERPT FROM THE RELUCTANT DONOR: (NOW AN EBOOK) I threw the kickboard aside and resumed my swimming. I coughed up water because I was crying again. Good, I thought grimly. Maybe I will drown and then I won’t have to give her a kidney. Serves you right if you drown, you stupid fool, I told myself. You know you won’t give her a kidney. That’s it! JoAnn knows me. She will understand. I can get out of it! I gave her false hope, and I was sorry, but JoAnn knows what a coward I am. She would realize how frightened I was of hospitals, blood and guts. I shivered in the pool just thinking of the smell of illness. I can’t have surgery – elective surgery. Yeah, maybe I’d have to have surgery if I ruptured an appendix, but then I’d be in pain so I wouldn’t know the difference. Surgery means risk to me. I don’t take risks. And, I’m not obligated because I can’t give away a part of myself. And, I bet the doctors will not allow it with our family history of PKD. Whew – I’ll be able to get out of it. She can put her name on the waiting list for a transplant. WHAT PEOPLE ARE SAYING ABOUT THE RELUCTANT DONOR: “If you want to be inspired, simply turn the page.” -Sanjay Gupta, MD, CNN Chief Medical Correspondent “More than ever, it seems we are looking for hope. We look for hope in our families, at our...
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"You have the power to donate life."
Kidneys don’t grow on trees!
About The Reluctant Donor
Organ Donation
Suzanne’s Story
Latest from Facebook
Dr. Somlo identified both the second-most commonly mutated gene in PKD and the two main genes responsible for autosomal dominant polycystic liver disease. He has also contributed to the field's understanding of the signaling pathways required for kidney cyst formation. He was the first to show that cystic disease is reversible— laying the groundwork for potentially curative treatments for PKD.
https://www.nasonline.org/news/2026-nas-election/
Dr. Somlo identified both the second-most commonly mutated gene in PKD and the two main genes responsible for autosomal dominant polycystic liver disease. He has also contributed to the field's understanding of the signaling pathways required for kidney cyst formation. He was the first to show that cystic disease is reversible— laying the groundwork for potentially curative treatments for PKD.
https://www.nasonline.org/news/2026-nas-election/
From the Blog
My cup runneth over with gratitude today as my sister and I celebrate the 20th anniversary of our successful surgeries on October 19, 2004. One of my kidneys was removed to be placed in her abdomen to give her life, untethered to the dialysis machine keeping her alive. Dialysis, though, is a miracle of modern science, too. Our grandmother died before dialysis, just as it was being invented by Dr. Willem Kollf far away in the Netherlands. Sadly, doctors in Chicago had nothing to save her when her...
https://gofund.me/5f4f9e90Aldo has been on dialysis for 21 years! That is truly difficult and a testament to his self-discipline and will to live. Aldo has worked full time while raising a family. Doctors have told him he is failing, Our church has united to help him find a kidney and to raise funds to support him and his family. Life . . . helping one another, loving one...
Often when I worry, worry, worry as I am prone to do, my mother would say to me, “trust in the Lord.” Growing up in a religious family , I’ve heard that a million times. It sure is hard to do when times are tough. It’s lovely and almost easy to do when things are going smoothly, the day is beautiful, and life is good. It brings to mind the story of Thomas, the apostle who did not believe it when the other apostles told them, “We have seen...
My sister Janice wasn’t even forty-years old when she suffered renal failure. She knew it was coming . . . the end of life as she knew it. That’s what happens when you have a genetic disease in the family – you know what you’re in for . . . As she became sicker, she added her name to the transplant waiting list. Her kidney function had declined to dangerous levels. Back then – in 1995, there weren’t as many people’s names on the waiting list compared to today....
by Suzanne Ruff, AAKP Board of Directors Member Within families who battle kidney disease as my family does, there is a time for sorrow and a time for joy, a time for weeping and a time for dancing. For many of my family members with complete renal failure, organ donation is their only hope. Some because they had been on dialysis for many years, others because they did not want to be on dialysis. Pre-emptive transplantation (receiving a kidney transplant before dialysis) is recommended more and more. Finding a...