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Unpacking the Gift of Life

Valen Keefer, Cristen Wathen

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A podcast series hosted by Valen Keefer and Cristen Wathen, two transplant survivors and friends sharing stories of hope, health, and emotional well-being along the kidney disease and transplant journey.
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Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
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Valen 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 hal…
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In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, resea…
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🎙️ New Episode of The Wasatch Way is Live! Mark Richards and I dive deep into the power of words and how they can truly change your life. A single word can uplift your spirit or even change the course of history—just like James Allen said, "A spoken sentence can turn the tide of history." Words have the power to heal, inspire, and transform. Don't …
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Meet Gretchen Jensen, a seasoned television host, former Miss USA, and co-owner of Starting Over Communications. With over 30 years of experience in media, she’s excelled as an international model, live TV host, and podcast personality. Gretchen captivates audiences with her charisma and expertise, making her a sought-after speaker and industry lea…
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Dave Phillippy is a dynamic leader known for his unwavering positivity and strategic problem-solving skills. Despite facing the challenges of Parkinson's disease, his journey has been marked by resilience and a steadfast commitment to overcoming adversity. From battling depression to navigating career setbacks and now facing physical challenges, Da…
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In 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 suppor…
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Christian Cox, a native of West Bountiful, Utah, has led a life marked by talent, resilience, and faith. He excelled in football and baseball at Bountiful High School, becoming a back-to-back state champion. His collegiate journey saw him playing at Southern Utah University before walking on at the University of Utah, where he earned a scholarship,…
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In 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 …
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Whitney Ringle is a warrior for mental health. As the founder and creator of Friendly Reminder, she’s on a mission to inspire and support those who struggle daily. After battling her own mental health challenges for years, Whitney took control—finding strength through therapy, medication, and unwavering support. Now, she channels her journey into a…
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Communication 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. Sec…
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Karen Wiltin’s faith exemplifies the power of believing you can overcome anything. Karen journey is one of resilience and determination. At 44, this Physician Assistant from Lucas, TX, faced a life-altering injury during a normal ninja training session in 2019. A devastating fall left her with broken neck bones and torn ligaments, almost paralyzing…
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Julie Janke is a force for good, blessed with resilience through her challenges. In this episode, she opens up about how she has overcome tough times. Julie was taught the value of hard work and adventure. From bike rides to home projects, instilled in her a deep love for learning and growth. At 25, facing the challenge of divorce, Julie redefined …
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Meet Dr. Linda J. Edgar, D.D.S., M.Ed. - President of the American Dental Association! Dr. Edgar, the 160th President of the ADA and the 5th woman to hold this prestigious title, has been a dedicated member since 1992. Her journey is truly inspiring. After 15 years of teaching junior high and Honors Chemistry, she pursued her dental degree at 37, e…
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In this episode of the podcast, we speak to professional speaker and community advocate Keisha Hickson, who was diagnosed with multiple myeloma in 2016. That’s a rare form of cancer that develops in a type of white blood cell called a plasma cell. We discuss navigating a rare cancer diagnosis, adjusting to a new normal and the importance of resilie…
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Meet Kelsey Lensman, a 28-year-old entrepreneur, sports medicine specialist, and inspiring speaker. Kelsey graduated from The Ohio State University with a degree in sports medicine, initially planning to attend physical therapy school. However, during her senior year, she felt a different calling. After a transformative year of training for a bodyb…
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You are going to love the passion, drive, and confidence from Natty in this powerful Beliefcast! Meet Natalyn O. Lewis, or "Natty," as everyone calls her—a wife, mother of four, and former NCAA Division 1 athlete. Natty harnessed the power of the mind for human achievement and brought that drive to coaching and business. With 25 years of business a…
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Meet Christian Smith, a true example of recovery and transformation! Married to Kelle for 40+ years, they have four wonderful children—Adam (Natalie), Chad (Haley), Sara (Holden), and Abbey (Cody)—and are blessed with eleven grandchildren. As a key marketer at Wasatch Recovery Treatment Center, Christian plays a pivotal role in guiding people towar…
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This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial. Connect with the LGS Foundation: W…
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Valen, 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 …
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Meet Dallen Atack: A Leader Shaping the Future! 🚴‍♂️ Dallen Atack, Executive Director of the Utah High School Cycling League, is at the forefront of youth development. Under his leadership, the league has grown to over 7,300 student athletes and nearly 4,000 coaches, making it the largest of its kind in the nation. Dallen's journey with the league …
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Vance Walker is a true inspiration! At just 18, he became the 3rd person in 15 seasons to win $1 million on American Ninja Warrior, despite being born with a rare form of cerebral palsy. His story is a powerful testament to overcoming obstacles and embracing life’s challenges. Now a professional athlete, Vance travels the world, motivating Fortune …
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In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their can…
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Janecia Large will touch your heart and inspire you with her vulnerability! Passionate about yoga, nature, art, and helping others heal, Janecia is a certified yoga instructor at Wasatch Recovery and a dedicated freelance photographer and model. She believes that what heals us can heal others. Janecia’s journey through addiction, loss, and trauma h…
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Meet Amy Abshere, a true advocate for blending fitness and recovery. With a background in Sociology and Business Management from UC Irvine, Amy excelled as a Division 1 athlete in three sports throughout her undergrad years. She graduated with honors and pursued substance abuse counseling at UCLA. Since 2011, Amy has been a professional in the fitn…
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In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year! Connect wi…
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Meet Roxanne Bennett! The co-creator of the Pinners conference. Pinners Conference is an exhilarating event where creativity knows no bounds. It’s an immersive experience filled with hands-on classes, captivating demonstrations, and the best shopping Utah has to offer. With over 120 classes and 400+ businesses, it's a paradise for DIY lovers, maker…
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We 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, the…
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Ally Jensen is back! A beacon of resilience and inspiration, Ally has the power to transform your perspective on life. Despite battling Vascular Compression, she faces each day with unwavering gratitude and love. In this episode, she opens up about the challenges she has faced since her last appearance on the show. Her unwavering determination and …
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In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chroni…
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Get ready to be inspired by a true warrior on and off the obstacle course, ‘The Kingdom Ninja,' Daniel Gil! As a motivational speaker and author, Daniel has conquered American Ninja Warrior and the realms of mental and spiritual well-being. With nine seasons as a national finalist, he embodies resilience, determination, and unwavering faith. Daniel…
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Paris Tews epitomizes kindness. Her mere presence uplifts those around her. After meeting her amazing husband in Colorado, Paris attended BYU before pursuing a career in photography. Her camera has taken her across the globe, capturing the beauty of diverse cultures and landscapes. In 2019, she embraced motherhood and has gracefully navigated its m…
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In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: …
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From a young age, Katie Harrison faced immense challenges: an absent father, an abusive stepdad, and a series of toxic relationships. For 25 years, she battled addiction, anxiety, and depression. But Katie's story doesn't end there. With the support of her friend Natalie, she sought help and spent six days in detox. She went on to graduate from Was…
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Meet the 2024 American Ninja Warrior Champion, Addy Herman! Last night on NBC Addy emerges as the America Ninja Warrior 2024 Women’s Champion, showcasing her indomitable spirit on NBC's primetime stage. Having conquered four seasons of NBC’s "American Ninja Warrior," Addy Herman ascends to the summit, standing tall as the last woman standing in sea…
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Valen 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…
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Dave Durocher is back! A beacon of authenticity and honesty. From a troubled past to transforming lives, Dave's journey is a testament to the power of truth. Arrested at 13, he faced a lifetime behind bars until a pivotal opportunity at Delancey Street changed everything. Instead of prison, he embraced redemption, rising to lead and inspire. Now, a…
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Witnessing people conquer adversity is truly inspiring, and few exemplify resilience like Easton Allred. A graduate from BYU, Easton delves into Advertising and Entrepreneurship with fervor. A former top long-distance runner, his journey took a detour due to surgeries and a mysterious illness, halting his athletic career. Yet, Easton's spirit remai…
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In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind. Connect with Jennifer Rega…
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Traci Peterson is the epitome of expertise and dedication! With a background as a Board Certified Family Nurse Practitioner and former collegiate division 1 volleyball athlete, Traci brings unparalleled knowledge to the table. As the Owner and CEO of Elevate Wellness and Aesthetics, she's treated over 6,000 female patients and impacted the lives of…
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Baylee Demars is passionate about helping others. Mrs. Utah America 2023, fluent in Spanish from serving in Spain, a scuba diving enthusiast who's explored 21 countries. With her husband McKay, they own 6 real estate properties and aim for more before 30. But her true passion lies in her platform, "Before the Rainbow", inspired by her angel baby. B…
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In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and avail…
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Heather Eck, a compassionate soul who paints with the hues of the human experience. As a multimedia abstract artist and writer, Heather's gift lies in interpreting people, places, and emotions through the prism of synesthesia, where colors hold profound significance. Guided by the chakra system and inspired by spirituality, she transforms vibrant e…
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Hosts 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 tr…
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Meet HR Huntsman! After founding his first company at 28, HR's become a renowned organizational strategist & coach. With 4000+ talks worldwide, he's helped transform countless companies, empowering leaders to achieve time and financial freedom. HR's also an author, speaker, and adventure enthusiast. Get ready to be inspired by HR's passion for maki…
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Christy Jex Gerlach’s journey through life's challenges has been a swamp of struggles: bankruptcy, marital strife, health issues, divorce, faith confusion, and the turmoil of shared custody. But from this swamp, she's drawn resilience, turning her heartbreak into a source of hope for others. Despite life's trials, Christy has found her stride. She'…
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In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since h…
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Overcoming adversity and addiction takes courage, resilience, and unwavering determination. Derrick Lamoreaux's journey is a testament to that. In the face of unimaginable challenges, Derrick refused to be defined by statistics. He decided to rewrite his story and prove that anything is possible when you set your heart to it. Join us as we hear Der…
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This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a W…
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Raised in Lake Powell, AZ, Lori Allred's entrepreneurial spirit has fueled her journey. With 5 children and 5 grandchildren, she's the force behind a Salon Suites in Colorado, empowering 23 independent professionals. Amidst the pandemic, she spearheaded a transformative summit for teens. From real estate to personal development, Lori's ventures ref…
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"Your words matter!” Becky Kemp, certified life coach, mentor, and motivational speaker, champions the transformative power of words through the 'Word Effect'! As a body mapping and trauma-informed breath-work facilitator, she guides you to harness the healing and creative potential of language, empowering you to realign your body, mind, and spirit…
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