Gene Okun, a 50-year-old renewable energy consultant and former competitive body builder, lives 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%). Today, 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 introduced 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 and his Big Dumb Kidneys launch campaign to find a living donor.
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.
"For many years, I watched my father struggle with PKD, the burden of relying on dialysis, and the many complications of this genetic disease that eventually contributed to his passing," said Gene. "My dad always made the best of every situation. I'm determined to do the same by motivating people to learn about kidney disease and the process of becoming a living kidney donor. People have questions about becoming a donor. With help from my big, dumb kidneys, I want to give them information and help connect them with people in need."
"I don't want to lose my brother the same way I lost my dad," explains Gene's sister, Tina Okun. "We have a big goal – to find Gene a kidney, to keep him healthy and alive, so that he can continue to make a difference in this world."
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.
Gene's Big Dumb Kidney Campaign
I launched this Big Dumb Kidney campaign with my sister Tina to find a living kidney donor and raise awareness of polycystic kidney disease and other kidney diseases that affect millions of men, women and children in the U.S. and around the world.
We are grateful to our friends, families, colleagues and business partners who are contributing their creativity, energy and skill to make this campaign possible. We especially recognize the people at SmithSolve, Second Melody, The O'Hara Project, Dave Patino Photography, SmartWorld Coffee, and the talented actors David Serero and Matt Locker who portrayed my kidneys: Dumb and Big. We would also like to thank the dozens of physicians, donors, recipients and leaders of patient organizations who are providing input, advice and support on this journey.
Together we can find a living kidney donor and help others fight kidney disease. Thank you in advance for your blessings and prayers.