Shows
Unpacking the Gift of LifeHope on the Horizon: How Every Voice Shapes Research InnovationThe future of rare kidney disease treatment is full of hope and innovation. Valen chats with Dr. Jill Green and Dr. Pranav Garimella about groundbreaking research and why the patient voice matters when working with advocacy groups and industry to shape future treatments. Leave feeling inspired and informed about the innovations driving change in rare kidney disease care. About Your HostValen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.comAdditional ResourcesDr. Pranav Garimella - Pranav Garimella, MBBS, MPH, FASN - Nep...
2025-12-0946 minUnpacking the Gift of LifeOn the Cutting Edge: Engaging in Rare Disease ResearchPatients are key to advancing rare disease treatment. IgA nephropathy (IgAN) patient Russ Roberts and his nephrologist Dr. Arnold Silva discuss the role of clinical trials in rare kidney disease research and how patients and providers can work together to shape the future of treatment. Get practical advice on how to get involved in clinical research and make a difference. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources CaRe network for patients and clinicians to locate investigators participating in clinical...
2025-10-3042 minUnpacking the Gift of LifePatient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 2)Strong relationships with your healthcare team are essential for managing complex care. Valen and her nephrologist, Dr. Adarsh Bhat, explore how patients and providers can collaborate, while transplant recipient Tristan Mace shares tips on managing a complex care team. Discover valuable tips on building effective, supportive relationships with your healthcare providers. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources Transplants.org, a nonprofit for transplant patients from first consideration to lifelong health, www.transplants.org Valeos, a nonprofit data ini...
2025-10-1636 minUnpacking the Gift of LifePatient-Provider Partnership: The Ins and Outs of Building Your Care Team (Part 1)Strong relationships with your healthcare team are essential for managing complex care. Valen and her nephrologist, Dr. Adarsh Bhat, explore how patients and providers can collaborate, while transplant recipient Tristan Mace shares tips on managing a complex care team. Discover valuable tips on building effective, supportive relationships with your healthcare providers. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources Transplants.org, a nonprofit for transplant patients from first consideration to lifelong health, www.transplants.org Valeos, a nonprofit data initiativ...
2025-10-1642 minUnpacking the Gift of LifeCare for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 1)Caregiving is a shared journey. Valen is joined by mother-daughter duo Linda and Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) patient Claire Bevec, along with Valen’s husband Noah, to talk about the evolving dynamics of caregiving. Hear advice and strategies for navigating the caregiving journey and transition from pediatric to adult care with compassion and resilience. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources ARPKD Facebook Support Group, https://m.facebook.com/groups/ARPKD/?ref=share...
2025-10-0239 minUnpacking the Gift of LifeCare for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2)Caregiving is a shared journey. Valen is joined by mother-daughter duo Linda and Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) patient Claire Bevec, along with Valen’s husband Noah, to talk about the evolving dynamics of caregiving. Hear advice and strategies for navigating the caregiving journey and transition from pediatric to adult care with compassion and resilience. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources ARPKD Facebook Support Group, https://m.facebook.com/groups/ARPKD/?ref=share...
2025-10-0229 minUnpacking the Gift of LifeAction in Advocacy: The Patient’s Guide to Finding Your VoiceAdvocacy starts with finding your voice. Valen and chronic rare disease patient advocate Swapna Kakani discuss how they discovered their purpose in patient advocacy and offer practical tips for anyone wanting to make a difference. Learn how to use your voice to drive change and support the rare disease community. About Your Host Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources Swapna Kakani (@swapnaspeaks), https://www.instagram.com/swapnaspeaks The Gutsy Perspective – Short Bowel Syndrome Quality of Life Research, https://www.thegutsyperspective.org/ Alabam...
2025-09-1834 minUnpacking the Gift of LifeLet’s Walk Together: Our Journeys with Rare Kidney DiseaseLiving with rare disease is a journey of challenges and triumphs. Valen and IgA nephropathy (IgAN) patient advocate Malkia White share their personal stories, exploring what makes the rare disease experience unique and the strength that comes from shared experiences. Tune in to hear about the power of connection in the rare disease community. About Your HostValen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com Additional Resources#ThatGirlNeedsAKidney, https://facebook.com/thatgirlneedsakidney #ThatGirlNeedsAKidney, https://instagram.com/ThatGirlNeedsAKidneyResources IgA Nephropathy Foundation, https://igan.org/ National Organization for Ra...
2025-09-0437 min
Coffee & CompatibilityWhat should we be doing better? A transplant recipient’s perspectiveValen Keefer, a two-time transplant recipient and leading patient advocate, shares her story and insights with the Coffee & Compatibility crew.
2025-02-241h 01
BeliefcastValen Keefer & Cristen WathenValen Keefer and Cristen Wathen have both turned their personal battles with polycystic kidney disease (PKD) and organ transplants into powerful platforms of advocacy and education. Their stories reflect resilience, courage, and a commitment to improving the lives of those facing similar health challenges.
Meet Valen
At 41, Valen has spent over half her life as a transplant recipient. Diagnosed with PKD at just 10 years old, she received a kidney transplant at 19 and a liver transplant at 35. With limited support during her own health journey, Valen has spent the last two decades as a passionate p...
2024-09-161h 00
Bold Like Her PodcastPatient Advocate, Educator & Consultant Valen KeeferValen is a passionate advocate for organ donation and polycystic kidney disease (PKD) with a zest for life and boundless gratitude for an extraordinary journey. She was diagnosed with PKD at the age of 10 which led to a challenging childhood full of hospital stays. On this episode we talk about her health journey and how she has now become a patient advocate and consultant to help the medical industry understand things from a patient's point of view. She also started a podcast "Unpacking the gift of life" where she and her co-host talk all things...
2024-09-0927 minUnpacking the Gift of LifeAsk Us AnythingIn the final episode of Season 1 of Unpacking the Gift of Life, Valen and Cristen invite you into an open conversation where no question is off-limits. In this “Ask Us Anything” special, they tackle topics that resonate deeply within the transplant community: coping with post-transplant depression, navigating the nuances of family and friend support, managing sun exposure, staying vigilant against COVID, and safeguarding your kidneys when surrounded by children. As they reflect on the season's journey, Valen and Cristen explore the inspiration that has fueled each episode, highlighting the resilience, hope, and community that have made this season so impa...
2024-09-0429 min
Wait, How Do You Spell That? A Rare Disease PodcastPKD and the Gift of Life, feat. Patient Advocate Valen KeeferIn this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story.
Connect with Valen Keefer: Website - Podcast - Facebook - Instagram - X - LinkedIn
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all iden...
2024-08-3040 minUnpacking the Gift of LifeAdvocating for Ourselves in Social and Healthcare RelationshipsCommunication and speaking up for ourselves is so important, yet can feel exhausting. Valen, Cristen, and their friend, Noelia, dig deep into three aspects of communication as it relates to patient advocacy. First, experiences of advocating for ourselves in our social relationships with partners, loved ones, friends, and the community at large. Second, the meaning, purpose, and value of a trusting relationship with our healthcare teams. And third, they share conversations about internal dialogue, being kind to ourselves, and emotional honesty. Tune in to learn ways to advocate for yourself, be empowered to have honest conversations, and live a...
2024-08-1943 minUnpacking the Gift of LifeThree Unique Perspectives on Having Children: Pre- and Post-TransplantValen, Cristen, and their friend, Elizabeth, share their individual paths of whether to have children, what led to their choices, and how ADPKD and transplant shaped their decision-making. They acknowledge the emotions surrounding their difficult decisions, share personal stories on how they navigated and embraced having or not having a child, and how they moved forward in a positive way. Listen in to be inspired and empowered by their vulnerability and determination.Learn more about your hosts:Valen Keefer, Patient Advocate, Consultant, Educator, Motivational Speaker: www.valenkeefer.comCristen Wathen, Licensed Counselor and Associate Professor...
2024-07-0947 minUnpacking the Gift of LifeLiving Well Alongside Chronic IllnessWe never forget the day we receive a life-altering diagnosis. Valen and Cristen share their pivotal moments of being diagnosed with polycystic kidney disease (PKD). With Valen being diagnosed as a child, they discuss the lessons learned from living with ADPKD from youth to adulthood. Through the challenges surrounding a lifelong health journey, they discovered a wellspring of resilience, strength, and above all, hope. Listen in to hear how they learned to live well alongside PKD and be inspired on how you can too. Learn more about your hosts:Valen Keefer, Patient Advocate, Consultant, Ed...
2024-06-0332 minUnpacking the Gift of LifeThe Importance of Being Proactive with Our Emotional WellbeingValen and Cristen delve into the profound world of emotions surrounding chronic illness. They discuss mental health stigma, the lack of support and resources, and why being proactive with our mental health is so important. You’ll learn insights into how to become an advocate for your emotional wellbeing and strategies for accessing and working with mental health professionals.Hosted by:Valen Keefer - Patient Advocate, Consultant, Educator, Motivational SpeakerCristen Wathen - Licensed Counselor and Associate Professor at Palo Alto Universitywww.valenkeefer.comwww.paloaltou.ed...
2024-05-0630 min
Mindful Movement with NayaPositive Mindset is the Key to HealingValen Keefer has endured more health and physical challenges than most people ever will, yet her positive mindset has created a deep resilience through it all. Valen is a patient advocate, public speaker, author, consultant and writer. In this episode, Valen shares how she finds strength to move through medical challenges and chronic pain and what drives her to achieve the many goals she’s set for herself.
If you would like to learn more about Valen and her advocacy work, please visit www.valenkeefer.com.
The post Positive Mindset is the Key to Healing appeared fi...
2024-04-0229 minMindful Movement with NayaPositive Mindset is the Key to HealingValen Keefer has endured more health and physical challenges than most people ever will, yet her positive mindset has created a deep resilience through it all. Valen is a patient advocate, public speaker, author, consultant and writer. In this episode, Valen shares how she finds strength to move through medical challenges and chronic pain and what drives her to achieve the many goals she’s set for herself.
If you would like to learn more about Valen and her advocacy work, please visit www.valenkeefer.com.
The post Positive Mindset is the Key to Healing appeared fi...
2024-04-0229 min
Unpacking the Gift of LifeMeet Your Hosts and Learn the Meaning Behind Unpacking the Gift of LifeHosts Valen and Cristen share how their unique yet parallel experiences of living with polycystic kidney disease (PKD) led to their serendipitous friendship and passion for patient advocacy. This episode introduces the two women and how they inspired the power of hope in each other before meeting. Valen and Cristen also explore how their PKD and transplant journeys motivate them to provide an honest perspective of the physical and emotional complexities of living with chronic illness. By offering the support and resources they wish they had, Valen and Cristen aspire to connect with others who are not a...
2024-04-0126 min
The Heart Guy presents The Heart of The MatterThe Heart Guy presents The Heart of the Matter with Valen Keefer Season 3 Episode 3In this extraordinary podcast conversation, Gary has the pleasure of sharing an important and electrifying conversation with the incredible Valen Keefer. As a patient for 33 years and an advocate for the past 17 years, Valen Keefer has become one of the most respected voices in both the Polycystic Kidney Disease and Organ Donation Communities. Leading organizations and patients all reach out to Valen for support and knowledge from her life-long, first-hand experiences. Valen's unforgettable story and incomparable strength become apparent and will have a lasting impact on all those who are fortunate enough to share in this podcast conversation. Valen...
2021-06-2432 minBeliefcastValen KeeferValen Keefer is driven to fight and to make a difference in this world! She radiates light and joy and has become a beacon of hope for countless people around the world.
Valen endured a challenging childhood full of hospital stays and cyst bleeds. After almost a year in the hospital as a teenager, both of her kidneys were removed, she was on dialysis, endured severe pancreatitis, received more than 70 blood transfusions and at the age of 19 received a life-saving kidney transplant. In her early 30s, PKD affected her liver and she became very ill agai...
2021-01-2254 min
The Thoughtful CounselorEP185: Living with Chronic Illness and Immunosuppression During COVID-19 – A Conversation with Valen Keefer and Cristen WathenDr. Megan Speciale talks to Valen Keefer and Dr. Cristen Wathen on the experiences and struggles of people with chronic illness and immunity suppression during the COVID-19 pandemic. The conversation explores how the pandemic is impacting immunosuppressed people and offers strategies to help support the health and wellness of your clients, loved ones, and community members who face increased risks related to COVID-19. For more on Valen & Cristen, links from the conversation, and then APA citation for this episode visit www.thethoughtfulcounselor.com The Thoughtful Counselor is created in partnership with Palo Alto University's...
2020-09-091h 02
KidneyTalk - An Online Radio Show By Renal Support Network7/14/2020 - Valen Keefer: A Double-Transplant Survivor StoryAt age 10, Valen Keefer was diagnosed with polycystic kidney disease. By age 18, after spending a year in the hospital, she needed a kidney transplant. As if that was not enough, in 2016, Valens chronic sepsis led to her need for a liver transplant. Now in her 30s, Valen shares her inspiring story of survival navigating many health hurdles.
2020-07-1400 min