Bio
The gift of life has given me more than extra time—it’s given me purpose. As a grateful two-time organ transplant recipient, I’ve spent more than two decades transforming a lifetime of personal health challenges into dedicated patient advocacy—championing the needs of the kidney disease, transplant, and chronic illness communities.
My transplant journey began at age 10 when I was diagnosed with polycystic kidney disease (PKD), a rare, inherited condition that has affected six generations of my family. Throughout my youth, I endured years of hospitalizations, the removal of both kidneys, dialysis, and at 19, received the gift of life—a kidney transplant from an incredible living donor. That life-changing event restored my health and sparked my lifelong commitment to helping others navigate transplant and chronic illness with hope and support.
In my 30s, PKD began affecting my liver, leading to life-threatening complications. After years of hospital stays, several bouts of sepsis, and being dual-listed for transplant, I received a second gift of life—a liver transplant from a deceased donor—at 35. Now, 23 years post-kidney transplant and 7 years post-liver transplant, I live each day with deep gratitude and a sincere zest for life, honoring my donors through action.
I joined the Transplant Community Advisory Council (TCAC) to ensure the patient's voice is not just heard—but respected, valued, and embedded into the evolving future of transplant care, research, policy, and education. Through this work, I hope to foster connection, encourage collaboration, and elevate the collective voice of our community—driving meaningful innovation, compassionate care, and improved quality of life for patients and their families.
Advocacy Experience
For over 20 years, I’ve served as a passionate patient engagement and advocacy leader, health educator, and strategic consultant—collaborating with life sciences companies, healthcare professionals, and research teams to improve patient-centered care and bridge the gap between lived experience and clinical innovation.
I’ve spoken on hundreds of stages across the U.S. and internationally, authored more than 250 blogs and articles, and host Unpacking the Gift of Life, a podcast centered on honest conversations about chronic illness, emotional wellbeing, and life before and after transplant. My advocacy spans national media engagements, the creation of my docuseries Letters of Hope—which explores the trials and triumphs of transplantation—and events and campaigns that raise both awareness and critical funding for research and support programs.
I’ve helped raise over $1.5 million for PKD research and have been honored with numerous awards, most recently the American Society of Transplantation’s Transplant Advocacy Award and Donate Life Hollywood’s Inspire Award for powerful storytelling and leadership in advocacy. I currently serve on multiple national advisory boards and executive steering committees, and contribute to research initiatives focused on improving outcomes, equity, and care for transplant and rare disease patients.
Across all my work, I strive to educate and empower both patients and professionals—ensuring that lived experience informs the systems, science, and support structures that shape our healthcare.
Advocacy Interests
My advocacy is rooted in empathy, connection, and the belief that everyone deserves access to compassionate, effective, and informed care. I’m especially passionate about:
- Fostering collaboration and connection: Breaking down silos between patients, providers, and industry, while creating authentic spaces for honest conversations about the transplant journey.
- Advancing patient-centered research and innovation: Guiding clinical trials, research initiatives, and innovations that put patients at the center.
- Empowering through education and storytelling: Developing educational and storytelling resources that encourage self-advocacy and amplify patient and community voices.
- Supporting awareness and wellbeing: Raising organ donation awareness, promoting living donation, and championing emotional and mental health for patients and caregivers.
When I underwent my first transplant, I had no resources and didn’t know anyone else who had walked that path before me. Sixteen years later, I approached my second transplant supported by a strong community and deeply enriched—not only by my own lived experience, but also by the wisdom and compassion of fellow patients, my care teams, my circle of support, and the broader community. That contrast illuminated the power of education, empowerment, and not walking this journey alone. I know firsthand how transformational organ donation can be—not just for recipients, but for everyone their lives touch. I strive every day to be the role model I wish I had growing up.
Contact Valen via email or visit her website at www.valenkeefer.com
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