Kevin Alexander and Richard Farquhar, two PKU advocates living on different continents, sit down for an honest conversation on the VitaFriends Voices podcast about rare disease life, mental health, and the power of human connection.
A Conversation Between PKU Advocates
There’s nothing better than a conversation with a friend. Seriously. It’s my favorite thing in the world.
And there’s a reason for that… I didn’t have many friends growing up.
Over the summer between 3rd and 4th grade, my school closed. And from that moment on, I felt like I didn’t belong anywhere. I couldn’t really connect with the kids at the new school.
I don’t really know if it was because of PKU. I’ve always felt different from others around me, and I think that’s a common experience for those interested in the arts. And it wasn’t until my junior year of high school that I felt like I could truly connect with others.
So… I was a lonely kid growing up. I couldn’t imagine being able to talk to another human being about the things I believe the most and hold dear in my heart.
And then, during the years I worked in TV news, that isolation returned. I didn’t know how to talk to the people I knew about the things I was seeing every night. If you haven’t yet read or listened to this, I’ll point you to my story on this site called “Regaining Hope: My Journey to Rare Disease Advocacy.”
In my natural state, I’m a loner. But things have changed over the years…
Recording for the VitaFriends Voices podcast in Hamburg, Germany with Richard Farquhar. The podcast is available on all podcasting platforms.
Appearing on the VitaFriends Voices Podcast
In 2023, I was at the ESPKU Conference in Birmingham, UK and met Richard Farquhar in person for the first time. We’d met on social media before and had some good chats. But there’s nothing quite like meeting someone else with PKU in person and having a conversation.
These days we talk all the time. And so, when Vitaflo heard that we would both be at the 2025 ESPKU Conference in Hamburg, Germany, they invited us to be on the VitaFriends Voices podcast.
The idea was simple: Get us in a room together and let us do what we do…
Talk to each other.
I’m so happy with how the episode turned out. It’s a conversation between two friends who know each other very well. We just happened to have cameras in front of us. And I can’t say thank you enough to Vitaflo for the invitation to appear on the show.
We spoke about our experience living with a rare disease, mental health, and how we balance life and advocacy. I hope this conversation helps you in some way.
The Importance of Community
I love the PKU community. With all my heart.
I talk a lot about my “advocacy journey”. That’s not just a storytelling technique to communicate about PKU advocacy in elevated language (although it certainly is). It’s how I view my life with PKU.
All of us who are advocating for the PKU community are also part of it in some way. Yes, I work to raise awareness of PKU and advocate for the community. But I am also a person living with PKU. My advocacy journey is part of that experience, but it is not the totality of that experience.
It is just one part of my entire life. I might be known in the community now, but the first 30 years of my life were experienced in total isolation from others affected by PKU. As of 2026, I’ve now been involved in the community and advocating for 15 years. That still means that I’ve spent double the amount of time of my life in isolation.
I’m still trying to catch up and learn what it means to live in community.
That’s why I’m still amazed at—and never take for granted—the power of community.
There is nothing in the world like two people affected by PKU sitting down and having an in-person, face-to-face conversation. If that is a common experience for you, be grateful. It is not the norm for most people affected by PKU. Those of us who are active and involved in the PKU community can easily take the experience for granted. I know I have in the past. That’s just human nature.
These days, I try to practice gratitude in all things. It’s an essential part of my approach to mental health. No matter what I’m dealing with, and I’ve had a lot happening in my personal life these last few years, I try to find something to be grateful for.
That’s the spirit behind this clip from the podcast…
The Burden of Rare Disease Life
The conversation with Richard touched on many issues. But he brought up something that we need to keep talking about in the PKU community…
And that’s the mental health burden of living with a rare disease.
We’ve had a lot of conversations about this. I suspect it’s one of the many reasons we moved from casual social media friends to close friends. We’re both concerned about health issues overall, but especially mental health.
It’s something I’ve been exploring ever since the 2022 National PKU Alliance Conference here in the US. There were multiple sessions about mental health at that conference. And I had numerous private conversations with friends that week about the relationship between PKU and mental health.
I returned from that trip with a renewed mission in my personal advocacy work… I wanted to share more of my experiences openly and explore this topic. It led to the creation of this website and to Never Give Up: A Rare Disease Podcast.
I’ve moved on from that podcast. That was for a certain season of my life. I had stories I wanted to tell. I told them. And now, I’ve moved on.
But the issue of PKU and mental health is still my top concern in advocacy. Because as I’ve kept traveling and speaking with others in the community, this is the conversation that keeps coming up.
We all seem to be concerned about the burdens of rare disease life.
I love this analogy Richard shared in this clip. I think it illustrates perfectly the challenge of going through life with the added weight of a rare disease like PKU.
Authenticity in PKU Advocacy
The other topic we discussed quite a bit throughout this episode was the challenges of PKU advocacy.
One of the pressures of advocating for PKU through social media is the temptation to make it a performance rather than living authentically in a public space. Social media used to be a relational platform. Now it’s an entertainment platform.
That’s fine. Things change, and it’s important to constantly reevaluate how you communicate with others, find what works for you, and try to meet people where they’re at.
But human nature doesn’t change. Whether you’re relating to others in a personal way, or engaging publicly and connecting with thousands of people, the one constant is that people crave authenticity.
I’m repelled by performative behavior. Don’t get me wrong… We all have to decide which part of our lives remain private and which parts are for public consumption. And if you’re speaking or sharing publicly, it’s always going to feel like a performance to a certain degree.
That’s natural. The way I speak in a public setting like this podcast is different than when I’m sitting around with friends and we’re just hanging out. Life in the spotlight is always different than life behind the scenes.
But when I criticize performative behavior, I mean something different. I’m referring to actions that are self-centered, agenda-driven, and fake. We can all tell when someone is not being genuine, when they are inauthentic, and when they care far more about what they can get out of you than investing in a relationship.
In storytelling terms, I’m going to break the fourth wall and be as real and transparent as I can be for a moment…
I speak with a lot of people in the PKU community. Over the years, I’ve met thousands of people in our small community. It’s impossible for me to have a personal relationship with every person. I wish that weren’t true, because I love sitting with people, hearing their stories, and connecting with them personally.
But it’s just not possible for me to have those deep connections with everyone. I have a few people in this community that I speak with on a regular basis, and try to invest in their lives as much as I can.
But even if I’m having a brief interaction with someone, whether in a social media message or an in-person chat, I try to show up in that moment and be genuine. To give them something real.
That’s the context for this clip from the podcast.
The Best Gift You Can Give
This conversation has remained on my mind in the months since the recording. It’s influenced some of the articles I’ve written recently, like “Self-Care is Advocacy” and “Confronting the Burdens We Carry”. But it’s also prompted me to slow down and experience life more, and seek that proper balance between life and advocacy.
All because of a conversation I had with a friend.
My friends who know me well know that I’m a talker. I make no apologies for that. It’s who I am. Or at least, who I’ve become. I used to feel like my desire to communicate with my friends was a burden for them. I’m an intense person, I can be a lot to deal with, and I know it. I share a lot with my friends. More than I share here, and that’s quite a bit. But even with my closest friends, there’s a lot that I don’t share. Some stories from my past are mine to carry, and mine to carry alone.
But there’s a reason I am the way I am. I’ve lost numerous people and have lived through trauma that has changed me permanently. Especially over the last two years.
And all of this has changed how I approach advocacy. My journey began because I had some things I wanted to say, ideas I wanted to share, and stories I wanted to tell. I had things I wanted to accomplish.
But now the greatest desire of my heart is to just show up for my friends and support whatever they are doing.
Because if there is one thing I’ve learned over the last 15 years of my advocacy, it’s this…
All we truly want to know is that we aren’t alone, and that someone has our backs.
So, these days I’m not as focused on the things I want to achieve. I’m choosing instead to be there for those I want to support…
Advocates I’m mentoring. My friends. And especially, friends who have become family.
The greatest gift you can give someone is your presence. You don’t have to say the right things or be perfect. You just need to show up, and show your friends that you care about them.
Because people are all that matter.
Thank you to Vitaflo for the invitation to appear on the podcast, and to Richard for such an engaging conversation. I hope it helped you in some way. If you want to explore more of what I’ve shared on this topic, you can read or listen to a story from on this site called The Emotional Toll of Rare Disease Advocacy.
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