Guest Author:
Rachel Bennett Steury
Living Kidney Donor & Donate Life Advocate

The true impact of organ donation is best seen through the lives it touches. For me, that impact began with my uncle – and ultimately shaped my journey as a living donor and lifelong advocate.

A Legacy That Began with Family

Some uncles bear the title while others really own it and make a tangible impact in the lives of those around them. My Uncle Ed easily fit into that category. My last memories of him are of a cool 20-something year-old. He lifted weights. He rode a motorcycle. He had a tanning bed tan. He spent money on my sister and me but more importantly, Uncle Ed invested his time in us.

When Uncle Ed died, I was barely a teenager. Despite their grief, my family found meaning amid the tragedy by honoring his life through organ donation. As a kid, I didn’t fully know what an organ donor meant, yet I knew it was important because my Grana used that term so lovingly when she talked about her son. Organ donation was something to be proud of. The letter she received from the organ procurement organization (OPO) in Indiana after his passing shed light on just how many people benefitted from his gift.

Pictured: Rachel Bennett Steury holding photo of herself, her sister, Uncle Ed and Grana.

“Your love of your son became evident in the fact that you were willing to donate,” the letter explained.

From South Bend, Indiana, to the island of Puerto Rico, the lives of five people were saved because of Uncle Ed’s organs, and countless others were healed through his tissue donation. I don’t recall if Uncle Ed ever traveled the world but knowing a piece of him was thriving on an island paradise was a comfort to Grana. Uncle Ed made a real impact. There were living, breathing humans on the other side of that trauma, which enabled our family to grieve and honor his memory.

The letter became Grana’s badge of honor. She would regularly share stories about Uncle Ed with the letter in her hand as she did so. She was so proud of Uncle Ed for how he helped so many people. And so was I.

From Inspiration to Action

Two decades after Uncle Ed’s death, he remained vividly in my mind as I watched a Katie Couric news segment about kidney chains. It was a concept I had never heard of. Giving a kidney away to a complete stranger and starting a chain reaction of other transplants sounded so futuristic. Igniting the spirit of altruism within everyday ordinary people to increase transplants and decrease the waitlist was a fascinating idea.

Every year during my birthday month I chose to do something outward to thank the world for another year. Oftentimes it had been donating blood or attending a fundraiser. But given this news segment aired during that month and I hadn’t decided what my deed was yet, it felt like a defining moment that inspired me to take the next step. After extensive research and discussion with my partner, Mat, I signed up to become a living kidney donor.

After nearly twenty months and dozens of medical tests, my kidney took its first solo flight from Chicago to Pittsburgh in July of 2012. Unbeknownst to me, in return, a second kidney flew from Pittsburgh to Chicago and was transplanted into a man in the same hospital just down the hall. The four of us, two donors and two recipients, didn’t know each other yet we were intricately connected for life.

My doctor came in to check on me in the recovery room. In his hand was his cell phone pointed directly at me. I could see there was a man in a hospital gown laying in bed talking, yet I couldn’t hear what he was saying. My doctor apologized for being all thumbs with his new phone and said,

“This is the guy down the hall. He’s thanking you for saving his life.”

Finding My Voice Through Advocacy

A few months after surgery, a friend of mine who was a kidney and pancreas transplant recipient invited me to a volunteer orientation with a group that advocated for organ donation. He thought, as a new kidney donor I’d fit right in. Little did any of us know, I had been connected to that organization for as long as I could remember. It was the very same group who delivered my Grana her coveted letter about Uncle Ed and the lives that he saved – Indiana Donor Network (IDN).

Discovering that the donation community was mobilized for advocacy was something I never anticipated. Through the power of storytelling, families just like mine united to share the facts and the personal connections to the lifesaving mission of organ donation. During my time as an Advocate with IDN, I registered donors at senior health fairs and hockey games, taught workshops about donation for university students and educated every 4th grade student in our county about how to keep their organs healthy.

When I relocated to California, I continued my donation advocacy with the OPO, OneLegacy. As an Ambassador in Los Angeles county, I worked with city and county officials to promote Donate Life Month Proclamations within their communities, shared my story with hospital staff during new employee orientations and skills days, and engaged with Hollywood writers and storytellers to ensure our stories were accurately and honestly told. When OneLegacy selected me to walk in the 2019 Rose Parade representing living donors with the Donate Life float, I was truly honored to be in such an impactful cohort.

Pictured: Rachel at the 2019 Rose Parade in the Donate Life Float representing Living Donors

Now that I’ve relocated to Hawai’i, the local OPO Legacy of Life Hawai’i has welcomed me with open arms. As a new Ambassador here, I am pleased to attend a Donate Life Proclamation Ceremony on the island of Maui this month. And, for the very first time in all of my years as a volunteer in the donation community, I am proud to be a participant and competitor at the 2026 Transplant Games, representing Team Hawai’i.

Pictured: Rachel in 2019 accepting a Donate Life Month Proclamation in City of Calabasas.

A System Built on Compassion & Coordination

Experiences like mine are made possible through the coordinated efforts of OPOs, hospitals, transplant centers, and advocates who work together to ensure that every donation is handled with care, respect, and dignity. Their work helps connect donors with patients in need, making lifesaving transplants possible.

For nearly 14 years, my left kidney has been living its best life without me on the other side of the country. Since then, I’ve met countless living donors who profess that they would donate over and over again if they had any more kidneys to spare. I too share that sentiment. The relocation of one fully-functioning kidney, expanded my family in unimaginable ways.

I did not expect to build the relationships I have over the years simply because I said “yes” to donation and then volunteered to talk and write about it. Grana’s storytelling and my Uncle Ed’s gift changed the trajectory of my life and the lives of others. Sharing my story gave my voice meaning in a way I hadn’t expected, and it has inspired others.

If my story resonates with you, I encourage you to consider registering as an organ donor, learning more about the donation process, and sharing your own story. Together, we can help ensure that more lives are saved and more families find hope through donation.

To learn more about volunteering to support organ donation, find your local OPO.

“Plant” a forget-me-not flower in honor of your Donor Hero this Donor Remembrance Day.

About the Author:

Rachel Bennett Steury is a writer who specializes in communications for non-profit clients. She has been an advocate and storyteller for donation since 2012 when she became a living kidney donor. An alum of the University of Massachusetts-Amherst, Indiana University and the Indiana Institute of Technology, Rachel is a former trade unionist with the United Steelworkers and a member of SOAR, the Steelworkers Organization of Active Retirees. She belongs to the Unitarian Universalist Church of Studio City and is a member of the Authors Guild, the Association of Writers & Writing Programs, the International Women’s Writing Guild and the Italian American Writers Association. 

Rachel’s writing has been featured in several national and regional outlets. Her essay honoring her Uncle Ed was featured in all 24 McClatchy-owned newspapers in April 2024. She is the author of the circular The Real Rachel BS on Substack where she writes about family, organ donation, minimalism, breast cancer, Hawai’i and her Sicilian heritage. Her memoir Losing My Kidney and Finding My Voice: Confessions of a Living Donor was published by BC Books.

To learn more about Rachel’s storytelling advocacy, visit her website bennettsteury.com/memoir