Never Give Up: A Rare Disease Podcast

Never Give Up: What Lies Ahead

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.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 1 | Regaining Hope: My Journey to Rare Disease Advocacy

My journey to rare disease advocacy began with my career in TV photojournalism. In this first episode of Season 1, I share my story of working in the field as a TV photojournalist, losing hope after witnessing the unimaginable, and regaining hope once I discovered the power of PKU, newborn screening, and rare disease advocacy.
In life, we all have our moments when hope feels lost, when the weight of the world seems to bear down on us.
My story is about those moments and how I found my way back. It's about the rare disease experience and how it can affect our mental health. But it's also about community and the power of reaching out. Join me on this journey of resilience, and let's discover together how to find hope again.
Resources
Here are a few resources related to this episode:
Regaining Hope: My Mental Health Story: This story was building for 20 years. I first shared it as an article on my blog last year. Here is that original article.
My PKU Life: I mentioned this short film in the episode. This is the film that began my journey into PKU, newborn screening, and rare disease advocacy. I cannot overstate how much it changed my life. It opened up a whole new world, and I am forever grateful. If you’ve never seen it, here it is.
The National PKU Alliance: I mention this organization a few times in the episode. It’s the non-profit that I’ve volunteered for and been associated with since the beginning of my advocacy journey.
Post-Traumatic Stress Disorder (PTSD): I mention PTSD in this episode. I share some details in service of the larger story, but I don’t go into exhaustive detail. Here’s some more information about it. It’s not something that only affects veterans or first responders. Anyone can experience PTSD, because anyone can suffer trauma.
Breaking News, Breaking Down: This documentary produced by journalist Mike Walter opened my eyes to the reality of journalists suffering from PTSD. If you’re in journalism, I encourage you to take the time to watch this film.
The DART Center for Journalism & Trauma: An essential resource for journalists who cover trauma. From their website: “The Dart Center for Journalism and Trauma, a project of the Columbia University Graduate School of Journalism, is dedicated to informed, innovative and ethical news reporting on violence, conflict and tragedy.”
Covering Trauma: Impact on Journalists: This article on the DART Center website explains the toll that covering trauma can have on the human telling the story. If you listened to the episode and think that the idea of journalists experiencing PTSD is overstated, please read this article with an open mind.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 2 | Rare Disease Advocacy and Burnout

When I first became involved in advocacy, I was passionate. I was motivated. But somewhere along the way, I lost that passion. Life happened. And I burned out.
In this episode, I reflect on how I arrived at a state of absolute burnout, how I had to take a break, and how I eventually found my way back to advocacy. I am now more passionate and motivated than ever in my advocacy work, and this time around, I am focused on prioritizing my mental health.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 3 | The Battle for Self-Worth

Growing up with a rare disease, I have experienced a lifelong battle to develop a positive sense of self-worth.
I told you this podcast would dig into subjects that are real and raw. I'm not thrilled to discuss this. But I think it’s something we need to start talking about in the rare disease community. How living with something that is always with you can weigh on your mental health. That’s a recurring theme throughout this podcast.
Although not everyone struggles with this, many do. Being an outsider in most social situations can affect your sense of self-worth, and that's what I'm reflecting on in this podcast episode.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 4 | The Healing Power of Friendship

Friendship heals broken hearts. And it's the best part about engaging in rare disease advocacy. If you open yourself up to the possibility, you can develop some meaningful friendships with those who understand you.
If you've recently started following my work, I can't thank you enough for listening to this podcast. This last decade of my career has exceeded my wildest expectations, and I am honored to produce content for this community.
But for those of you who are my friends in the community, those I met on social media or at a conference and have befriended, I'm just going to say it...
Thank you for accepting me as I am.
My friends in this community encourage me to keep doing what I'm doing. Not because of what you've done for me. But for who you are.
You're my friend.
Medical Nutrition Equity Act
I mention the Medical Nutrition Equity Act (MNEA) in a promo that runs during this episode. Here is a link with more information about that bill:
Patients & Providers For Medical Nutrition Equity (PPMNE)
You can get more info about the MNEA on this site, and if you're in the metabolic disorders community you can share your story here as well. Great info here that help with talking points when advocating to legislators.
Even if you're not in the metabolic disorders community, we could use your help. Please contact your legislators today and ask them to co-sponsor the Medical Nutrition Equity Act.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 5 | Healthy Choices Start Now

Sometimes we think we’re living by our core values. But then something happens and we realize that we’re way off the mark. That what we think we value hasn’t entered that place deep in our hearts where our actions align with our intentions. This is about one of those moments in my life, and it happened last fall.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 6 | The Power of Choices: Making an Impact on the World

As someone who grew up with a rare disease, I've always been aware that there are forces outside of my control. I was born with something that has a profound impact on my daily life... my routine, my diet, every social interaction.
It's tempting to feel like your life is out of control. To adopt a fatalistic attitude and think, "What's the point?" At least, that's been part of my story.
But we can't see the impact that our choices will have years down the road.
In this episode, I'm going to tell you the story of someone I knew whose legacy lives on years after his death. Whose actions years ago are still saving lives.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 7 | Overcoming Trauma and Embracing Life

Trauma.
That’s a strong word. If you’ve never been through a traumatic experience maybe that word doesn’t resonate with you. But if you have, just reading that word is enough to take your breath away. It carries weight.
The idea for this episode came to me after realizing many of the rare disease parents whom I’ve interviewed still struggle to this day when thinking about their child’s newborn screening experience. I’ve heard so many stories from parents who will never forget receiving that phone call, shutting themselves away while they try to process what’s just happened, and learning to cope with a completely different world than the one they thought they live in.
But I also realize that there are other life experiences that overwhelm you and influence every area of your life. Your physical health, your emotional health, and your mental health all influence and are affected by every aspect of your life, including your rare disease experience. And when you experience a trauma, it affects all of you.This episode represents my attempt to pull all of this together, and try to figure out how to move forward in life when life throws you an experience that hits you in the chest and takes your breath away.
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
Email: kevinalexander@pkujournal.com
 

Season 1 Ep. 8 | Confronting Imposter Syndrome As A Rare Disease Advocate

Imposter Syndrome... It's the fear that others will realize you don't know what you're doing or that you don't have it all together. And for Rare Disease Advocates, it can hold you back from discovering the power of your voice. Your story matters. Because you matter. And your voice is powerful.
And I've learned that one way to confront Imposter Syndrome is to share my story.
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
Email: kevinalexander@pkujournal.com

Season 1 Ep. 9 | Life Is Amazing: Finding Beauty in Life’s Challenges

This story begins with a moment in my life where everything was going great... and then everything fell apart. Life often turns sharply, and when it does we can struggle to make sense of it all. That's often the case for those who live with a rare or chronic disease. One minute you're on vacation. And the next, you're in the hospital.
Life is just a combination of moments. Some are amazing, others mundane. And then it's awful. How can we learn to see the beauty in it all?
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
Email: kevinalexander@pkujournal.com