Do You Have Gene's Kidney? Newport Beach Man Seeks Living Donor For Rare Disease

NEWPORT BEACH, CA — A Newport Beach resident's unique quest for a kidney and his efforts to raise awareness about what it means to be a living kidney donor.

On National Donate Life Day,Gene Okun, a 50-year-old renewable energy consultant, shared his battle with polycystic kidney disease (PKD), a genetic disease that causes uncontrolled growth of cysts in the kidney and can eventually lead to kidney failure.

Since receiving a diagnosis of PKD, Gene’s kidneys have grown big (doctors say they may be the world’s biggest) and dumb (since they’re now only functioning at 18%), according to Okun.

On National Donate Life Day Gene and his big dumb kidneys launched a new campaign to raise awareness of kidney disease and the life-changing impact of becoming a living kidney donor.

With help from his family and friends, Gene will introduce BigDumbKidneys.com to inspire people to learn more about PKD and kidney donation.

“Polycystic kidney disease varies greatly in its severity, and there are a number of symptoms and complications associated with this disease,” said Terry Watnick, M.D., from the University of Maryland School of Medicine. “Raising awareness of PKD and the need for a drug treatment is important. I hope more people understand the impact the disease has on patient lives.”

Gene’s large and low-functioning kidneys quite literally get in the way of normal activities. Daily routines like eating, sleeping and even a simple hug are extremely difficult. The Big Dumb Kidneys campaign videos bring to life specific instances that can be awkward and uncomfortable with the constant accompaniment of two big and dumb kidneys.

“We applaud Gene’s efforts to raise awareness for this severe, life-threatening disease,” said Andy Betts, CEO of the PKD Foundation. “Our mission is to find treatments and a cure for PKD and to improve the lives of those it affects. We do this through funding programs of research, education, advocacy, support, and awareness on a national level, along with direct services to local communities across the country. We look forward to working together toward a new treatment.”

Currently, more than 93,000 people are waiting on kidney transplant lists in the U.S. The wait for a deceased donor could be five years, and in some states, it is closer to 10 years – time that Gene and his kidneys just do not have. To discover more about becoming a donor or to help Gene in his search for a live kidney, please visit BigDumbKidneys.com or follow on Facebook and Instagram @BigDumbKidneys and with the hashtag

#BigDumbKidneys.

Photo, courtesy Gene Okun