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Donor-To-Donor Kidney Chains Personify American Selflessness, Save Lives

This article is more than 4 years old.

If you’ve ever purchased a cup of coffee for the person behind you in the drive-through, you know the satisfaction of causing a selfless chain reaction.

But for Ned Brooks, starting a chain reaction has been a live-saving endeavor.

Brooks’ story began four years ago last month, when the 65-year-old donated his kidney at NewYork-Presbyterian/Weill Cornell Medical Center as a ‘non-directed donor’ – not knowing where or to whom his organ would go.

His kidney quickly made its way, through the National Kidney Registry, to a young mother named Danielle Shaffer, whose father in turn made a donation of his own, leading to two more such life-saving kidney transplants. (The process by which recipients are matched with donors is determined completely by an anonymized computer algorithm.)

The following year, Brooks founded Donor to Donor, a non-profit 501(c)(3) foundation devoted to raising awareness of kidney disease and promoting living kidney donation. According to the organization’s website, 19,858 Americans received kidneys in 2018.

But the deficit is daunting. The organization fights to bring attention to the growing pool of more than 100,000 patients currently in need of a kidney around the U.S. – a list that once included Neil Emmott, a Fort Lauderdale businessman who spent 15 years managing a diagnosis of polycystic kidney disease until the situation became critical in April 2016.

Emmott’s wife, Lisa, answered the call to donate – until a surprise diagnosis altered her plans, and her life’s calling.

“While undergoing the final evaluation phase in trying to donate a kidney for my husband, I was diagnosed with fibromuscular dysplasia in my renal arteries,” Emmott said via email. “While grateful that this is not a life-altering condition, I was devastated at being denied the opportunity to donate. My rejection as a potential kidney donor served as a massive redirection toward kidney awareness and advocacy. Hoping to inspire others, I work diligently to share our journey in mainstream media to dispel the myth that you have to be a ‘match’ to save the life of your intended recipient.”

Emmott now serves as a board member and Director of Media Outreach for Donor To Donor. The organization’s story has been featured in USA TODAY, Quartz, and Fort Lauderdale Magazine, as well as on the TODAY Show. Brooks shared his story in a Ted Talk in 2017, whose comments on YouTube include dozens of people indicating their willingness to move forward with a donation.

And even after his kidney was a match for young Danielle, Brooks’ personal involvement in the process was far from over. Shortly after the transplant, word came that Brooks’ kidney had failed, remitting her to the grueling process of dialysis.

“When I learned that Danielle’s kidney had failed, I was devastated,” Brooks said. “I felt that I had failed her in some way, and I was determined to find her another kidney. We told her story on our Facebook page and did what we could to promote her story, but the people who came forward were not a match.”

Brooks turned to the National Kidney Registry’s newly created Advanced Donation Program (ADP), which allows non-directed donors to designate a ‘voucher’ for a kidney in a subsequent chain.

“(The program) was originally designed to enable someone with a relative with a kidney disease, who would need a kidney sometime in the future, to donate now and for the relative to receive a kidney at a later date when it was needed,” Brooks said. “I saw this as a way to open the entire NKR pool of donors to be a possible match for Danielle, if we could find a person willing to donate and give Danielle a voucher.”

In Nov. 2018, Betsy Snow – wife of Donor to Donor team member and previous donor Peter Snow – made that donation, gifting the voucher to Danielle – who received the kidney she needed to save her life this February.

And as for the Emmotts?

“I used to say ‘Kidney disease picked the wrong wife,’ meaning I will fight relentlessly to raise awareness about living kidney donation. I have now changed my tune to ‘The right wife was denied to donate,’” Emmott said. “If I had been approved as a donor, my husband would have kept this private within our family and never told a single soul. Instead, we were forced to tell the world.”

Thankfully, the process worked for Neill Emmott. In Sept. 2017, he found a match on the registry and received a new kidney from a non-directed donor in California.

Nevertheless, the Emmotts continue the fight.

“Even though our story is about our family, it is not about ‘us,’” Lisa Emmott said. “It is about the 100,000 other people within the United States who are waiting for a kidney. I will never be able to donate my kidney, but I have vowed to donate my voice to this cause.”

Those interested in donating their kidney can learn more on Donor to Donor’s website or Facebook page, and begin the process by filling out this form.

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