Founded by 4 Non-Directed Kidney Donors Who Gave to Strangers: The Coalition to Modify NOTA
4 donors. 4 lives saved. Now we're fighting to save thousands more.
We gave kidneys to strangers. Now we're working to fix a broken system.
Real donors. Real stories. A real plan to end the kidney shortage.
We didn’t wait to save a life. No one else should have to wait either.
From personal donation to national change—join us in reforming NOTA.
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Elaine Perlman
For all media inquiries, contact Elaine at: ElainePerlman@modifynota.org
Elaine Perlman is a non-directed donor who is advocating for two bills that have been introduced to Congress, the End Kidney Deaths Act & the Honor Our Living Donors (HOLD) Act. Elaine donated her kidney to a stranger and launched a kidney chain for four people to get life-saving kidney transplants in Georgia, Oklahoma & Washington State. Elaine is the Executive Director of Waitlist Zero as well as the leader of the Coalition to Modify the National Organ Transplant Act. Elaine is a volunteer mentor for prospective kidney donors for the National Kidney Donation Organization (NKDO) & was on the National Kidney Foundations’s Community Advocacy Committee for 3 years. For 33 years, Elaine was a teacher of elementary, middle & high school. From 2016-2022, she was a Professor and Program Director of the Peace Corps Fellows Program at Teachers College, Columbia University. Elaine is a volunteer mentor for Plant Powered Metro New York helping kidney disease and other patients transition to a primarily plant-centered diet. For the National Kidney Foundation, she cohosted both a workshop and a cooking demonstration about the benefits of plant-based eating to promote kidney health. Elaine’s son Abie donated his kidney to a stranger at age 19. She followed in his footsteps 6 months later. Elaine is an artist who has painted eleven school murals & wrote the book, "Be the Parent You Wish You Had."
Donated kidney to a stranger in 2020
Contact Elaine at Elaine@WaitlistZero.org
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Ned Brooks
Ned Brooks is a non-directed kidney donor and retired businessman.
Ned founded the National Kidney Donation Organization (NKDO) in 2016 with the idea that no one can speak with a potential kidney donor as well as someone who has donated themselves.
NKDO is now the largest kidney donor advocacy organization in the country, with over 50 living donors who mentor donor candidates at more than 40 transplant centers across the country.
NKDO has reached out to 25,000+ donor candidates this year and has facilitated 600+ transplants.
Despite the success of NKDO and other advocacy groups promoting living donation, the number of living kidney donors in this country remains below 6,000, with almost 100,000 patients awaiting a transplant.
The only viable solution is for the government to stimulate living donation by removing disincentives for donors in a manner that is neither coercive nor exploitative, and it is to this end that Ned has joined with Elaine, Matt and Cody to found the Coalition to Modify NOTA.
Donated kidney to a stranger in 2015
Contact Ned at NedBrooks@ModifyNOTA.org
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Cody Maynard
Cody is a non-directed kidney donor who served as the Director of Research and Policy for the National Kidney Donation Organization for 3 years.
Cody has presented at transplant conferences including the European Society of Organ Transplantation’s Conference on Ethical Legal and Psychological Aspects of Transplantation, and the University of Chicago’s Symposium on The Future of Living Donor Kidney Transplants.
He has written op-eds, met with legislators, and interviewed over 100 kidney donors.
Cody was also a health care strategy consultant at Deloitte Consulting, and now helps lead the transplantation strategy for a value-based care organization as Senior Manager of Strategic Operations.
Cody also enjoys hobbies such as skydiving, painting, pickleball, rock climbing, CrossFit, and has traveled to over 35 countries.
Donated kidney to a stranger in 2017
Contact Cody at CodyMaynard@ModifyNOTA.org
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Dr. Matt Harmody, MD
Matt is a non-directed kidney donor and a recently retired physician, the latter now allowing him to dedicate more time to kidney donation advocacy. His kidney journey started when, while an engineering undergraduate student, his father suddenly developed end-stage renal disease. After several years of dialysis and a failed deceased donor kidney transplant, the disease took his life. This experience led Matt to return to medical school and eventually become an emergency physician.
Matt took care of dialysis patients nearly every day of his twenty-year career. In 2017, he was a non-directed kidney donor. Since then, he has given presentations to local organizations on his experience as a donor. He has become a mentor with NKDO. He has also recently been invited to be a member of the Living Donor Steering Committee, a newly created sub-committee of the Strategic Registry of Transplant Recipients (SRTR), the data collection arm of HRSA’s Division of Transplantation. The Committee is charged with developing recommendations for the most appropriate long-term follow-up of kidney donors.
Matt enjoys endurance racing, including running ultramarathons and competing in adventure races. This interest and his donation led him to join a team of 21 other living kidney donors that summited Mount Kilimanjaro on World Kidney Day in March 2022, to bring awareness to living donation, demonstrate what is possible post-donation, and to launch initiatives which inspire, support, and educate people about the experience of living donation.
Donated a kidney to a stranger in 2017.
Contact Matt at m.harmody@modifynota.org
Our History of Public Awareness Campaigns
Ned Brooks’s TedTalk - viewed by tens of thousands
In 2019, we developed this PSA about kidney donation
This video was seen by tens of thousands of individuals after being shared and re-shared
Around 150 individuals reached out to learn more about the donation process, where our team of donors coached individuals through the appropriate next steps
No individuals ended up donating as a result of this PSA Campaign
The conversion rate of interested parties to actual donation is staggeringly low
Facilitated Television Appearances Including Good Morning America
Our Co-Founder Elaine Perlman donated to a stranger after her son, Abie donated when he was 19 years old.
To help spread awareness about the kidney shortage, Elaine supported the organization of a meetup of her son Abie and his recipient, a 21-year-old young man.
We have helped facilitate several other television appearances with our colleagues at NKDO.
Successfully Lobbied for the Living Donors Support Act in NY
This piece of legislation from Waitlist Zero, successfully lobbied by Elaine Perlman, provides state reimbursement to all living organ donors from New York State for expenses incurred as result of donation.
While alleviating the financial burden of kidney donors is an important step in removing the barriers to donation, the number of living donors had declined in the past two decades, despite multiple efforts to make donation a cost neutral experience.
Promoted Kidney Donation Awareness On Several Podcasts
Ned Brooks joins Freakonomics Radio hosts Stephen Dubner and Steven Levitt—both supporters of the End Kidney Deaths Act—for a conversation about kidney donation and reform.
Elaine Perlman was interviewed by a medical doctor on Causes and Cures — a podcast dedicated to health education.
Presentation at the Ethical, Legal and Psychological Aspects of Transplantation Conference
Our Team conducted a psychometric analysis of over 150 non-directed donors to determine key personality traits of individuals more willing to donate a kidney.
The goal of our analysis was to further inform our PSA campaign by catering information and outreach to individuals more primed for kidney donation.
The Title of our presentation, was called, “Take Us Off Your Pedestal: Normalizing Non-Directed Kidney Donation.”
Despite our best efforts, donating a kidney to a stranger has not become more normalized over the years — living donation has declined over a 20 year period.
We’ve Promoted Living Kidney Donation at conferences
Our team has promoted awareness about kidney donation by tabling at health expositions to discuss donor protections and processes with potential donors.
Our team was met with confused reactions from individuals who said, “I’m already an organ donor” because they are registered as deceased donors.
Despite our efforts, and signing up many interested parties, the actual follow-through rate for donors to actually sign up to get evaluated, let alone donate was less than 1%.