Never Give Up: A Rare Disease Podcast

Kevin Alexander
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Life. Mental Health. Rare Disease. That’s what Never Give Up is all about. This podcast is a companion to my blog, PKUJournal.com. I’m Kevin Alexander, and I’ve been a professional storyteller for over 20 years. I’m also an adult living with the rare disease Phenylketonuria, or PKU. Since 2012 I’ve been traveling the world advocating for PKU, newborn screening, and rare disease awareness. Living with a rare disease can be a heavy burden, so on this podcast I share thoughts, reflections, and stories to motivate you on your journey.

  1. Episode 1

    A Story From PKU History: "When Are You Going To Treat My Child?"

    This is a story about rare disease history. Phenylketonuria, or PKU, was the first rare disease detected and diagnosed through newborn screening. And this story is from those early days—it's about the development of the first treatment for PKU in Birmingham, UK during the 1950's. But while that story is often told from the perspective of the doctors who developed the treatment, this story is from a different perspective. It’s about one mother—Mary Jones—and her relentless determination to get help for her daughter. And it’s about her daughter—Sheila Jones—who could not communicate verbally but whose life and experiences paved the way for an entire generation of those affected by PKU. And newborn screening. And all rare diseases. I consulted with Professor Anne Green, author of the book “Sheila: Unlocking the Treatment for PKU”, Birmingham Children’s Hospital in the UK, and the ESPKU to tell this story. If this story helps you in some way, please consider purchasing the book. All proceeds go to the Birmingham Children’s Hospital Charity, who funded the book’s production and own the copyright. I also consulted with the European Society for PKU and Allied Disorders Treated as Phenylketonuria, or ESPKU, to tell this story. While this story is from my rare disease community, it’s one I hope will encourage or inspire anyone affected by rare disease. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    A Story From PKU History: "When Are You Going To Treat My Child?"

  2. Episode 2

    Life Moves On: A Story of Hope

    This episode is an exploration of hope in the darkest of circumstances, a reminder that even when we feel stuck, life moves on. It’s about an experience early in my advocacy journey, during a trip to Brazil where I spoke at a newborn screening symposium. A moment my past caught up with me. This episode navigates through the complex landscape of memory and past experiences in the pursuit of hope. Hope that guides us through our darkest hours. Resources In the episode I mention a few resources for Mental Health Awareness Month: Mental Health America Video: "Kerrington" Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    Life Moves On: A Story of Hope

  3. Episode 3

    When I Almost Gave Up: My Struggles with PKU Treatment

    At war with your body and mind… That’s what it feels like to have PKU and struggle with high PHE levels. This is something I’ve never shared in detail—the years when I struggled with the PKU, low-protein diet. I kept quiet because of fear. And this episode is the first time I’m telling that story in detail. The episode is called “When I Almost Gave Up”, and I’m sharing it so that maybe you won’t. Resources PKUGlobe23 View recordings from a virtual event in 2023 hosted by the Global Association for PKU. It was a three day event featuring presentations from researchers and advocates from around the world. And on the final day of the event, I gave a speech called Owning Your Rare Disease Story, and moderated a panel discussion with adults living with PKU from the US, Australia, England, Ireland, and the Czech Republic. https://gener8.eventsair.com/pkuglobe23/   NPKUA Treatment Series In 2020 I produced a series of videos for the National PKU Alliance about various treatment options for PKU, as well as coping with treatment during critical years of development. These videos are below, but consult with your clinic to discover what works best for you, and to learn about newer treatment options that might be available. The Diet: https://pkujournal.com/pku-treatment-series-the-diet/ Kuvan/Sapropterin: https://pkujournal.com/pku-treatment-series-kuvan/ Palynziq: https://pkujournal.com/pku-treatment-series-palynziq/ Transition to Adulthood: https://pkujournal.com/pku-treatment-series-transition-to-adulthood/ Returning to Treatment: https://pkujournal.com/pku-treatment-series-returning-to-treatment/ Pregnancy and PKU: https://pkujournal.com/pku-treatment-series-pregnancy-pku/   Owning Your Rare Disease Story The speech I gave at PKUGlobe23 inspired an episode of this podcast that I released around Rare Disease Day in 2024. Here is a link to that episode on my website: https://pkujournal.com/owning-your-rare-disease-story/ Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    When I Almost Gave Up: My Struggles with PKU Treatment

  4. Episode 4

    Living With A Mission

    Sometimes it takes confronting your darkest moments to embrace living with a mission. This is the story of how I discovered my mission in life, and it begins one morning when I was on my way to work and almost died. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    Living With A Mission

  5. Episode 5

    Lead From The Front

    In this episode, I delve into the profound lessons on leadership inspired by Major Richard Winters of Easy Company, 2nd Battalion, 506th Parachute Infantry Regiment, 101st Airborne Division, famously portrayed in "Band of Brothers." I'm sharing this in honor of the 80th anniversary of the beginning of this story: D-Day. Discover how his principles of leading from the front, embodying character, and making sacrifices resonate deeply in the context of rare disease advocacy and everyday life. Join me as I reflect on the courage and dedication required to inspire and lead others, especially under the most challenging circumstances​​. Source Material I highly recommend the books below if you'd like to learn more about Major Richard Winters and Easy Company. Band of Brothers by Stephen Ambrose The Biggest Brother by Larry Alexander Beyond Band of Brothers by Major Richard Winter Accepting Your Rare Disease Life This episode from Season 1 shares my story of learning to accept one of the consequences of my rare disease: I could not serve in the military. That was my original dream. But along the way I've learned that some dreams have to die for new ones to be born. I took my desire to serve in the military and channeled that into serving my rare disease community. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    Lead From The Front

  6. Episode 6

    Triggered: A Story about PTSD and Emotional Triggers

    June is Post-Traumatic Stress Disorder (PTSD) Awareness Month. So, in this episode I dive into my deeply personal and often unsettling experiences living with PTSD. I share an event from 20 years ago that continues to impact me today, exploring how certain triggers can instantly transport me back to moments of intense anger and grief. This episode highlights the emotional struggles tied to PTSD and emphasizes the importance of confronting and understanding negative emotions. This episode navigates the complexities of trauma, the difficulty of staying present, and the ongoing journey toward healing and acceptance. Whether you’re dealing with PTSD, supporting someone who is, or simply seeking to understand more about the human spirit, I hope this story helps you think about your life and the importance of mental health. In this episode I discuss a specific experience from my years as a TV photojournalist. If you're unfamiliar with that story I recommend listening to the first episode of this podcast. It's called Regaining Hope: My Journey to Rare Disease Advocacy. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    Triggered: A Story about PTSD and Emotional Triggers

  7. Episode 7

    The Emotional Toll of Rare Disease Advocacy

    In this episode of "Never Give Up: A Rare Disease Podcast," I delve into the often-overlooked emotional toll of rare disease advocacy. Drawing from my extensive experience as both a rare disease advocate and a professional storyteller, I share personal reflections on the mental health challenges we face as advocates. Advocacy, whether public or private, involves sharing our stories and connecting with others. I recount poignant moments, including a heartbreaking encounter with the grandmother of a young person with PKU, illustrating the profound impact of advocacy on our emotional well-being. Join me as I explore the balance between advocating for others and managing personal health, and discover how we can navigate the emotional weight of our work. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    The Emotional Toll of Rare Disease Advocacy

  8. Episode 8

    "Call Me Bob": A Story About Dr. Robert Guthrie

    In my latest episode, "Call Me Bob," I delve into the life and legacy of Dr. Robert Guthrie, a pioneering figure in newborn screening. Guthrie's groundbreaking work in developing the bloodspot test for newborn screening has saved countless lives and continues to impact the world today. Join me as I share his story, the personal connections I've made with his family, and the profound lessons I've learned from his dedication to ensuring every baby gets a fair chance at life. Listen to discover how one person's relentless passion can change the world. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    "Call Me Bob": A Story About Dr. Robert Guthrie

  9. Episode 9

    Be A Healing Presence in the Rare Disease Community

    In this episode of Never Give Up, I delve into the impact of being a healing presence in the rare disease community. I share personal stories, reflections, and a poignant encounter with a remarkable physician that reminded me of the power of empathy and kindness. Join me as we explore what it means to truly care for one another in our journey through life with rare diseases. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    Be A Healing Presence in the Rare Disease Community

  10. Episode 10

    Recognize Your Limits: A Story about Self-Care

    Life can change sharply. I finished writing this episode in late May. In late June, my sister-in-law, Angel Alexander, passed away from a rare, aggressive form of breast cancer. She received her diagnosis in early 2023, while I was writing Season 1 of this podcast. Over the last 18 months I watched as she showed the world how much of a courageous, fierce cancer warrior she was. She dedicated the remainder of her life to raising awareness of cancer. And she taught me what it means to never give up. And so, I dedicate this season in her honor. She was the most courageous, determined person I’ve ever met. While working on this season I knew this might be happening soon. But it still didn’t feel real. When I wrote this episode called “Recognize Your Limits”, it had a different meaning to me. I share in the episode that I’m taking a break for a while. Well, given this death in my family I will be taking an extended break from this podcast, advocacy, and social media. I don’t know when I’ll be back. But I will. Until then, please share this show with someone you know who could use some hope. Tell those whom you love that you love them, hug them tight, and never take them for granted. And never, never, never give up. Transcript Available A transcript of this episode is available on my blog. About Never Give Up: A Rare Disease Podcast This is a storytelling podcast exploring the intersection of life, mental health, and rare disease. Sometimes I interview guests, but mostly… I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up. Contact Kevin Alexander Website: PKUJournal.com Instagram: @kevinalexander_pku Facebook: @pkujournal Email: kevinalexander@pkujournal.com

    Recognize Your Limits: A Story about Self-Care
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About

Life. Mental Health. Rare Disease. That’s what Never Give Up is all about. This podcast is a companion to my blog, PKUJournal.com. I’m Kevin Alexander, and I’ve been a professional storyteller for over 20 years. I’m also an adult living with the rare disease Phenylketonuria, or PKU. Since 2012 I’ve been traveling the world advocating for PKU, newborn screening, and rare disease awareness. Living with a rare disease can be a heavy burden, so on this podcast I share thoughts, reflections, and stories to motivate you on your journey.

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