National campaign to capture stories of hope and transformation through living donation

(LOS ANGELES) –
The Transplant Research and Education Center (TREC), in partnership with the Terasaki Institute for Biomedical Innovation and One Lambda, Inc. (onelambda.com), part of Thermo Fisher Scientific and leading producer of in vitro diagnostic products for the HLA transplant community, has launched a six-month mass media campaign for kidney and transplant patients, living donors, and medical providers to raise awareness about the innovative resources available through the Living Donation Storytelling Project. The campaign aims to capture the stories of 500 living donors and inspire, educate and promote living donor kidney transplant (LDKT).

The online digital library houses more than 160 videos that donors, recipients, family members, and people in need of a transplant video-record using their smartphone, laptop, or tablet. They shared candidly about their experiences with kidney disease and transplantation. Those in need of a kidney can also share a video story about their search for a living donor. The goal of the campaign is to gather more stories, help providers learn about this tool, and to amplify the patient voice by inviting diverse patients from communities that typically experience health disparities to tell their stories about LDKT.

The Living Donation Storytelling Project uses digital storytelling to supplement traditional education practices and materials, as the patient is invited to take active part in determining what is important to their care and treatment journey. Allowing real people to speak in their own ways about their living donor kidney transplant experiences, naturally creates a more health literate and culturally competent resource.

“After Dr. Amy Waterman visited the One Lambda team in January to present on TREC’s Living Donation Storytelling Project, we realized what a powerful tool real patient and donor stories are to enroll living donors and empower patients to seek transplantation,” said Laurel Nelson, Sr. Director of Marketing of Thermo Fisher’s transplant diagnostics business. “We are honored and excited to partner with TREC and TIBI to amplify this program to encourage living donation and further demonstrate our commitment to the transplant community and patients.” Thermo Fisher’s transplant diagnostics business, also called One Lambda, is committed to improving the lives of patients worldwide by driving innovation and delivering quality products.

The resource provides immediate utility for busy providers by:

• Allowing them to share stories on common questions that are hard to address such as ‘How do I ask someone to be my donor?’ ‘What does it feel like to donate a kidney?’ and ‘Should I accept a kidney from my child?’
• Providing a free educational supplement that can be delivered via email, shared on social media, or shown at dialysis centers or in the waiting area.
• Helping patients to hear first-hand how others in similar situations overcame challenges to receive an LDKT, even if support groups or mentoring programs are not available.

In interviews with the TREC team, many donors have emphasized just how valuable hearing about the donation experience first-hand was for them as opposed to only hearing the educational materials from their provider. One interviewee said, “I think definitely for me the human element, just understanding what other people struggled with because I felt like it kinda helped prepare me for potentially things that I might have a hard time with… the real-life experience, not just like somebody that works for [the clinic] but somebody that donated a kidney. That’s a big difference I think.”

By empowering patients and living donors to share their experiences directly through the Explore Living Donation Storytelling Project, future donors and recipients can hear firsthand about the process from someone who has experienced it. Listening to stories about how patients and donors overcame challenges in their journey can serve as a roadmap for those just beginning the transplant or donor evaluation process.

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This campaign and the Living Donation Storytelling Project continue Dr. Paul Terasaki’s long legacy of work serving transplant patients, and the joint mission of TREC and TIBI to provide personalized transplant and living donation support for all.

If you have a living donation story to tell, please visit https://explorelivingdonation.org/tell-your-story/ to get started.

Stewart Han, shan@terasaki.org, +1 818-836-4393

The Terasaki Institute for Biomedical Innovation (terasaki.org) is a non-profit research organization that invents and fosters practical solutions that restore or enhance the health of individuals. Research at the Terasaki Institute leverages scientific advancements that enable an understanding of what makes each person unique, from the macroscale of human tissues down to the microscale of genes, to create technological solutions for some of the most pressing medical problems of our time. We use innovative technology platforms to study human disease on the level of individual patients by incorporating advanced computational and tissue-engineering methods. Findings yielded by these studies are translated by our research teams into tailored diagnostic and therapeutic approaches encompassing personalized materials, cells and implants with unique potential and broad applicability to a variety of diseases, disorders and injuries.

The Institute is made possible through an endowment from the late Dr. Paul I. Terasaki, a pioneer in the field of organ transplant technology.

Transplant Research and Education Center (TREC) (exploretransplant.org) is an interdisciplinary research and education center directed by Dr. Amy Waterman and located at the University of California, Los Angeles, a leading transplant center in the United States. TREC leads the field in conducting state of the art clinical research to understand and improve important issues affecting transplant outcomes, intervenes to reduce disparities in access to transplantation for diverse patient and donor populations and tests the effectiveness of interventions to increase transplant referrals and living donation rates. Through collaboration with healthcare providers, national transplant leaders, and healthcare policymakers, TREC translates findings from effective clinical trials into practice to ensure that patients can live longer and enjoy the best possible quality of life.