As our understanding of APOL1-Mediated Kidney Disease (AMKD) grows, so does the need for greater awareness. National APOL1-Mediated Kidney Disease (AMKD) Awareness Day is observed annually on the last Tuesday of April. 

In this episode of Kidney Transplant Conversations, we share an inspiring story of resilience, advocacy, and hope. Sharron Rouse opens up about her personal journey with kidney disease — a journey that began with a diagnosis of lupus nephritis, only to later discover she was actually battling FSGS (focal segmental glomerulosclerosis), a condition sometimes linked to the APOL1 gene variant that is found in around 35% of people of African ancestry. 

In a heartfelt conversation with host Rolf Taylor, Sharron discusses the shock of her diagnosis, the challenges of navigating unclear answers, and the life-changing gift of a kidney transplant from her sister.

As the founder of Kindness for Kidneys International, Sharron is now a tireless advocate, raising awareness about the genetic factors influencing kidney health. She emphasizes the importance of early diagnosis, the critical role of research into APOL1-related kidney disease, and the urgent need for greater awareness in communities of African descent.

Tune in to hear how Sharron’s story offers hope to kidney warriors everywhere, highlights the life-saving potential of genetic testing, and makes a powerful case for early intervention. This episode is both inspiring and a call to action for greater education, early screening, and community empowerment.

Kindness for Kidneys Website: https://www.kindnessforkidneys.org/

APOL1-Mediated Kidney Disease (AMKD) Awareness Day: https://www.kidneyfund.org/amkd-day-proclamation 

Should I get tested for the APOL1 gene? https://www.kidney.org/kidney-topics/apol1-mediated-kidney-disease-amkd 

(c) Project Advocacy 2025

In part 2 of our discussions with Liz, Grace & Shelley, we invite our guests to reflect on six specific questions about their experiences of giving and receiving, and the world of kidney donation. 

   1. One thing that has been most wonderful about this experience 

We delve into the remarkable stories of how Shelley, Liz, and Grace were connected through the life-saving act of kidney donation. Shelley, a special education teacher in Portland, Oregon, shares her journey of seamlessly becoming a donor, while Liz, a transplant recipient from Chicago, recounts her renewed zest for life and the accountability inspired by her "kidney sisters." Grace, a hospice nurse from the small island of Kauai, reflects on the joy and challenges of living far from her recipient and the emotional impact of reading a heartfelt letter of gratitude.

Through candid conversations, these women discuss the surprising ease of the donation process, the profound relationships formed, and the ripple effects of their decisions. They also highlight the struggles of shifting societal perceptions of organ donation and emphasize the importance of becoming advocates for this life-changing cause. Tune in to hear about their transformative experiences and the shared mission of encouraging others to consider donation, making a lasting impact on the lives of many in need.

(c) Project Advocacy 2024 

S2 E5. Giving thanks for kindness, science and cooperation during Thanksgiving week. A kidney paired donation story. Liz, Grace & Shelley - Part 1   

What if you saw a billboard asking for a volunteer to donate a kidney and “share your spare” to save someone’s life? What if it just made immediate sense to you, and you found yourself saying yes? Meanwhile, Liz was in urgent need of a kidney transplant. She had been unwell as a child and her kidneys had failed, just as the first kidney transplants were being pioneered.

Now, 40 years later, Liz needed a new transplant. Her cousin, Grace, had volunteered to donate, and was figuring out how to make this happen from her remote location 5,000 miles away – on the Pacific Island of Kauai. Grace wasn’t a good match for Liz, but a great match for someone else. And Shelley was a near-perfect match for Liz. Somehow, they needed to plan an exchange and give Liz her best possible future health. 

Today’s episode is a reunion for three people whose lives intersected in a beautiful and remarkable way. Grace, Liz, and Shelley share their stories and perspectives, and pull back the curtain on the incredible benefits of living kidney paired donation (KPD) and the important role of vouchers.

Shelley, a special education teacher from Portland, takes us through her decision-making process to become a kidney donor after seeing a billboard advertisement, including the role played by the National Kidney Registry in her journey. Liz, a four-time transplant recipient and a patient healthcare entrepreneur from Chicago, discusses her life-changing moments associated with her transplants, starting from the age of 11. Grace, a hospice nurse from the Hawaiian Islands, reveals the emotional moments leading up to her decision to donate a kidney and the challenges faced due to her geographic location.

The episode further explores the scientific advancements in kidney transplants, the impact of living donations, and the importance of organizations like the National Kidney Registry in facilitating these life-saving processes. The National Kidney Registry is one of the world’s leading kidney exchange organizations. Please visit  https://www.kidneyregistry.com/  for more information. 

And tune in to Part 2 next time, where the trio reflect on their experiences, and comment on what could be improved in the world of kidney transplants, and why more people should step forward to donate.

© Project Advocacy 2024

Welcome to the latest episode of Kidney Transplant Conversations, where we continue our exploration of the Transplant Games of America in San Diego. This inspiring event, bringing together organ donors, recipients, and their families, marks a joyful reunion after the challenges posed by the pandemic. The San Diego games also celebrates it's uniquely diverse local population, including contributions from indigenous and latino artists. 

Join us as we dive into the heart of the games, starting with the Fun 5K run along San Diego's picturesque waterfront. We meet participants who share their personal transplant stories and the significance of this gathering. Their journeys reflect themes of hope, gratitude, and the powerful impact of organ donation. 

We also explore the vibrant activities inside the convention center, meeting organizations like Life Force and the Chris Klug Foundation, which provide invaluable support and information. Unique performances and cultural events further enrich the experience, celebrating life and community.

For those inspired to join this incredible community, discover how you can get involved with the Transplant Games and learn more about living kidney donation. Listen in to feel the positivity and unity that define this remarkable event.

For educational purposes only. Not intended as medical advice. 

(c) Project Advocacy 2022 - 2024

Chris Klug Foundation    https://www.chrisklugfoundation.org/ 

Living Donation info:    https://www.kidneyregistry.com/ 

Transplant Games of America  https://www.transplantgamesofamerica.org/copy-of-teams 

With members of Team North Carolina as our guide, we delve into the vibrant world of the Transplant Games of America. Discover the rich history of these games, which began in 1978 in England and have since evolved into a significant event for transplant recipients and donor families in the U.S. Hosted by the Transplant Games of America, this bi-annual event brings together thousands of participants, fostering a sense of community and showcasing the spirit of life after transplant.

Join us as we explore the experiences of attendees at the San Diego games, where diversity and inclusion are celebrated, and where families find a place to honor their loved ones who have given the gift of life. From the competitive spirit of sports events like basketball and pickleball to the heartwarming connections made through pin trading, there's something for everyone at the Transplant Games.

Hear personal stories from Team North Carolina members, including their journey of camaraderie, competition, and advocacy. Learn how these games provide a platform for education, awareness, and the sharing of personal journeys, inspiring others to become organ donors and support this life-changing cause.

Tune in to experience the magic of the Transplant Games and the uplifting reminder of the power of community and the resilience of the human spirit.

(c) Project Advocacy 2022 - 2024 

Find your local team attending the Transplant Games of America 

https://www.transplantgamesofamerica.org/copy-of-teams 

In this compelling episode of Kidney Transplant Conversations, Valen Keefer joins us to share her extraordinary journey through the world of organ transplantation. From a young age, Valen faced the challenges of living with a chronic illness, navigating the complexities of kidney and liver transplants. Her story is one of resilience, advocacy, and empowerment.

Valen discusses her impactful docuseries, "Letters of Hope," which chronicles her experiences and serves as a resource for both patients and caregivers. She highlights the importance of finding one's voice in the healthcare journey and the vital role caregivers play in the process.

As a passionate advocate, Valen talks about her mission to educate and inspire others, emphasizing the significance of organ donation and the need for accurate portrayals in media. Her upcoming recognition at the Donate Life Hollywood Inspire Awards underscores her commitment to raising awareness and fostering understanding.

Tune in to learn more about Valen's remarkable story, the power of community, and how individuals can live a full life post-transplant. Discover how her experiences are helping to shape a brighter future for those in the transplant community.

(c) Project Advocacy 2022-2024

Link: Letter of Hope Docuseries https://valenkeefer.com/letters-of-hope-docuseries 

Link: Valen Keefer Website https://valenkeefer.com/ 

In this heartwarming episode of "Kidney Transplant Conversations," host Rolf Taylor sits down with Shana Pereira, a remarkable woman who received both a kidney and heart transplant on Christmas Day. Shana shares her extraordinary journey, beginning with the discovery of her kidney failure on a previous Christmas Eve, and the numerous challenges she faced along the way to receiving her transplants.

Despite the odds stacked against her, Shana's story is one of resilience, hope, and the power of a strong support network. With the help of her devoted friends and compassionate doctors, she navigated through the complexities of finding donors and battling additional health issues, including heart failure and a potential cancer diagnosis.

Shana's faith and determination, combined with the love and prayers of those around her, culminated in a true Christmas miracle. Her inspiring tale is a testament to the strength of the human spirit and the belief in something greater than oneself. Join us as we explore the twists and turns of Shana's incredible journey, offering hope and encouragement to anyone facing their own life challenges.

(c) Project Advocacy 2022 - 2024 

Mike was just seven years old when he lost his father to kidney disease, and many years later he learned that he was at an advanced stage of the inherited condition called polycystic kidney disease (PKD), and his kidneys were slowly failing. 2019 was a very challenging year and Mike experienced multiple medical issues. He knew he needed a transplant, and that the waitlist was long and with no guarantees. 

Mike started researching how to go about receiving a kidney from a living donor, and he came across resources from “The Big Ask, The Big Give,” a program of The National Kidney Foundation. Asking for a kidney can be awkward, and using social media is a whole different world for someone who never used Facebook, so Mike needed a champion. In this episode he shares how before he asked for a kidney, he had to ask for help, and navigate the pandemic at the same time. 

Meanwhile, Mike’s niece Andrea had never thought very much about donating an organ until she heard Uncle Mike’s story. In the second part of this episode, Andrea shares with us how she came to the realization that she could do something significant to help. She also discusses how gifting a kidney has opened up a new and unexpected richness in her life, including her involvement with Kidney Donor Athletes, and a recent trip to Mount Kilimanjaro. 

FULL TRANSCRIPT ⬇

With host and series producer Rolf Taylor. 

Resources mentioned during this episode: 

The Big Ask, The Big Give, NKF   www.kidney.org/transplantation/livingdonors 

Kidney Donor Athletes    www.kidneydonorathlete.org/ 

Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.

Excerpts

“I’m not very media savvy, let’s put it that way. I don’t do any social things on the internet because I’m an old guy. They said find someone to be your champion. My daughter-in-law volunteered for this project.”

“What happened to me was a miracle because if you look at kidney transplants for people my age, it’s really low, when I got my transplant, I was 69.” 

“The next words she said were “I’m approved as a donor for Uncle Mike. It just came out of the blue! We had no idea that she went through all these tests. She didn’t want anyone to know in case she could not help.” 

“It has been one of the best things that I have done in my life. I’m just so grateful for the doctors and for science and for all the support that I was able to find. I was so blessed to be able to give this gift.” 

© Project Advocacy, 2022 - 2023

In the previous episode we heard Darryl’s story, how he needed a kidney transplant because of kidney cancer. This week we meet Jim, who responded to “The Big Ask,” and donated a kidney to his close friend Darryl. Jim shares with us his side of the story, explaining why doing this for his “brother” was so important to him, and he describes his overall experience of making “The Big Give.”

And Dr. Adam Bregman joins us to talk about his experience with kidney transplant patients using resources from programs such as “The Big Ask, The Big Give” to help find their own living donor. He also explains how a kidney from a living donor tends to last longer. We also explore the subject of health disparities in kidney disease and discuss some of the root causes.

FULL TRANSCRIPT ⬇

With host and series producer Rolf Taylor.

Resources mentioned during this episode:

The Big Ask, The Big Give, National Kidney Foundation                www.kidney.org/transplantation/livingdonors

Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.

© Project Advocacy, 2022-2023 

In our last episode, the first of several episodes celebrating National Donate Life Month, we sat down with Jennifer Martin from the National Kidney Foundation and learned about “The Big Ask, The Big Give”, a program dedicated to helping people with chronic kidney disease find their living kidney donor.

In this episode we meet military veteran Darryl Shaw, a kidney cancer survivor who also served multiple tours of duty. Darryl’s family members helped champion a successful campaign to raise funds for a kidney transplant, funding that helped his eventual living donor complete the initial compatibility tests. Darryl now volunteers as a mentor with programs such as “The Big Ask, The Big Give” from NKF, sharing his experiences and giving encouragement. He can offer perspectives from the point of view of ESKD patient who received a kidney from a friend and colleague, as well as being someone who opted for home dialysis and overcame many medical challenges. Darryl is now studying for his master’s degree in Pastoral Counseling, and he plans to continue in service to the kidney patient community.

With host and series producer Rolf Taylor.

FULL TRANSCRIPT ⬇️ 

Resources mentioned during the podcast:

Every April is National Donate Life month  www.donatelife.net/ndlm/

The Big Ask, The Big Give, NKF  www.kidney.org/transplantation/livingdonors

The National Foundation for Transplants  www.transplants.org

Mighty Cause  www.mightycause.org

We thank the participants and advisors who help make Kidney Transplant Conversations possible.

Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.

© Project Advocacy, 2022