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Kidney Failure: A Giving Smarter Guide

March 09, 2017
   
   

In honor of World Kidney Day, the Milken Institute Center for Strategic Philanthropy (CSP) has released Kidney Failure: A Giving Smarter Guide. This year-long effort to identify the key philanthropic opportunities was initiated to move the needle on unmet needs specific to kidney failure research and treatment. This work was commissioned by Robert and Cynthia Citrone, generous philanthropists looking to make a difference for their father and the broader kidney disease community. 

From the desk of Robert and Cynthia Citrone

When Rob’s father was first diagnosed with end stage renal disease (ESRD) we were devastated. How horrific is a disease that is named “end stage?” Where is the hope? I watched in despair as Rob sprung to action to help and comfort his father.

How could we not be donors? How do the best doctors in the world not have a plan? Rob has built his success on action and identifying opportunities, yet this process was an exercise in futility in this new ESRD terrain. It was then that we found the Milken Institute and its Center for Strategic Philanthropy. Mike, Melissa, and the entire CSP team worked with us to investigate the problem, mobilize our resources, and develop a call to action. Thanks to the Institute, we are enthused and invigorated to dedicate our time and resources to make an impact in the ESRD field. With its leadership, we are poised to give hope back to our father and so many others.

From the desk of Robert L. Citrone

Chronic kidney disease, end stage renal failure, hemodialysis, peritoneal dialysis, major life changes, endless medications and tests, possible transplant; this is the life of a patient with renal disease. Like so many diseases, renal disease is not discriminating; it happens to all people from all walks of life―young and old alike. 

When I was told that I would end up on dialysis within 6 to 12 months, I felt as though I had just been given a death sentence. Life, as I knew it, would never be the same again, for me or my family. As dialysis options were discussed, I made the decision to do hemodialysis. However, once home, I began to do my own research and, contrary to some members of my medical team, discovered that hemodialysis was not the right option for me or my lifestyle.

As a new peritoneal dialysis patient, with end stage renal failure, the focus then turned to the possibility of a kidney transplant. For me, this was one of the most heartbreaking and frustrating experiences of my life. Even though I am on a waiting list, I have basically been precluded by the government’s guidelines. I have learned that, for the majority of transplant patients, finding a donor falls directly onto the shoulders of the patient and his or her family. Through the process of seeking a transplant, I have discovered that there is a real lack of knowledge, among the general population and even the medical world. Several years ago, I identified a few potential kidney donors. However, the donors themselves were dissuaded from donating. With better knowledge, there may have been a different outcome.

We all like to think we are unique―that our stories are ours alone. But that just isn’t true. The longer I live the life of a renal patient, the more my life and story becomes intertwined with other renal patients who I have come to know, who are fighting for a longer and better life. I often think of the U.S. veteran, who is seeking a kidney donor by posting his plea on the windows of his car. The grandmother who refuses to go through the rigors of dialysis and dies much too young. The 41-year-old man who dies of cardiac arrest in his sleep. The young transplant woman who is given a second chance and gives birth to a healthy baby. The young athlete who received the gift of life 11 years ago from his sister. The 12-year-old daughter who lost her beloved father. Or the husband who just lost his wife to kidney failure, but continues his own battle with the disease, even if it means losing various limbs.

I have so many questions… Why should so many people have to die so young from such a disease? Why must it be the responsibility of individuals to find their own donors? Why doesn’t the general population and medical field have a better awareness of kidney disease? Why isn’t there better donor awareness? What will happen when, or if, the transplanted kidneys fail? Why are there no specific drugs for renal disease? What about artificial kidneys? Is it possible to have a better type of dialysis? And the list goes on and on. This is not a battle to fight alone.

And now, woven into our story is the Milken Institute’s Center for Strategic Philanthropy. In the new chapter of our story, CSP has brought together the preeminent doctors and researchers in the renal disease field to discuss, strategize, prioritize needs, and set goals. Meeting with this team of doctors and researchers, I once again discovered that I am not alone. They have the same questions and concerns. And how wonderful that, through their work, they are seeking to answer those questions.

As you review the Giving Smarter Guide, you will find that it is a powerful tool to guide us as we go forth to defeat kidney disease. I invite you to join our story. A story where hope is beginning to be intertwined into the pages. A story of hope that will continue for generations to come. A story of hope that will bring a longer and better life for renal disease patients.


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