Never Give Up: A Rare Disease Podcast

Kevin’s Journal | Entry 10: The Power of Small Decisions

"Do people change?"
If you've listened to my show at all, then you know I say the answer is, "Yes." But while we are tempted to think that change always occurs in some sweeping, dramatic fashion, the truth is... most change is gradual.
The result of small decisions, taken daily, that change us over time.
This is a story about a small decision that changed me. Of course, I had no idea of the ramifications at the time. It was just another day at work for me. But it was also a monumental day—February 1, 2003. The day of the Space Shuttle Columbia Disaster.
And looking back, all these years later, one small decision I made that day had a ripple effect that changed my life.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. 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
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 11: Your Story Matters

"Your story matters".
I say that all the time. But do I really believe it? If I did, then why did I stop sharing my daily routines related to my rare disease years ago? Since so much of my life revolves around PKU advocacy, then why don't I share my personal diet and routines?
I reflect on that in this episode. And will keep trying to open up, be authentic, and feel free to share who I really am, both on this podcast and on social media.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. It's an exploration of the intersection of life, mental health, and rare disease. 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
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin's Journal | Entry 12: Owning Your Rare Disease Story

Join me, Kevin Alexander, as I share my rare disease story, living with Phenylketonuria (PKU), and the lessons I've learned on this journey. Through embracing our unique narratives to understanding the strength in our community, this episode delves into the complexities and victories inherent in the world of rare disease advocacy.
This episode was inspired by an article I wrote for PTC Therapeutics called “Owning Your Rare Disease Story”.
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
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com
Resources
There are a few resources I mention throughout this episode.
Global Genes: A great organization to connect with on your rare disease journey. Check out their website and Facebook group.
My PKU Life: This is the short documentary that began my advocacy journey. If you’re new to PKU, this is a good place to start.
PKUJournal.com Videos: I’ve produced a lot of videos over the years for the PKU, newborn screening, and rare disease communities. I’ve posted a few of them on my website.
“The Power of Small Decisions”: An episode of this podcast that tells my story of covering the Columbia Shuttle Disaster in 2003. A reflection on how we often can’t realize the impact of our actions until years later.
“Regaining Hope: My Journey to Rare Disease Advocacy”: The first episode of this podcast tells my mental health story. My journey of working in TV photojournalism to my experiences in PKU, newborn screening, and rare disease advocacy. It’s the foundation of this show, a reminder of what I believe with all my heart: no matter how dark it gets, there is always hope.
Louisiana Metabolic Disorders Coalition: I do a lot of national and international advocacy work, but this is the organization I serve close to home. We represent those affected by all metabolic disorders.
Global Association for PKU (GAP) PKUGlobe23: This episode is adapted from a speech I gave at a virtual PKU event in December 2023. The recordings from this multi-day event are available for on-demand viewing. It included presentations from leading researchers and advocates, as well as a panel discussion I hosted with adults living with PKU from around the world.
“Finding Your Rare Disease Community”: The first of two episodes of this podcast recorded from the 2023 ESPKU conference. It features interviews with 26 people from around the world affected by PKU. While set at a PKU conference, the story is an exploration of the power of connecting with any rare disease community.
“One Global Community”: The second episode from ESPKU 2023. It features 8 in-depth interviews about PKU-specific topics. But, there are some great reflections in here about the power of connecting with community, the importance of mental health, and the emotional toll of rare disease advocacy.
Everylife Foundation and Rare Disease Week: I attended this event for the first time in 2023, and highly recommend it for all rare disease advocates. We often find ourselves advocating for our specific rare disease communities, but this was a great opportunity to meet others in the broader community. And realize that as we fight for ourselves, we are also fighting for others.
Rare Disease Day: This global event is held on the last day of February each year. There are about 10,000 rare diseases affecting 400 million people globally. And this day is a reminder that we are not alone.

Season 2 Ep. 1 | "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

Season 2 Ep. 2 | Life Moves On

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

Season 2 Ep. 3 | When I Almost Gave Up

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

Season 2 Ep. 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

Season 2 Ep. 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

Season 2 Ep. 6 | Triggered

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

Season 2 Ep. 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