About PKU Journal

PKU Journal is a collection of stories and reflections on life from someone living with PKU.

Hello, I’m Kevin Alexander, and I have Phenylketonuria, also known as PKU. It’s a rare genetic disorder that affects how I metabolize protein. I’ve been an advocate for PKU, newborn screening, and rare disease awareness since 2012. My first project was a film called “My PKU Life”, and since then I’ve been traveling around the world speaking about life with this rare disease and producing other media projects about PKU.

Portrait of Kevin Alexander, creator of PKU Journal. He writes about PKU, newborn screening, rare disease, and mental health advocacy.

Kevin Alexander, Creator of PKU Journal, a collection of stories and reflections on life from someone living with PKU.

I’m also a writer.

I’m one of those people who can’t fully process their thoughts until they write them down. So, I’ve kept a daily journal, off and on, since 2004. I have piles of journals stacked on my bookshelf in my home office. Journaling is how I make sense of life.

And that’s why I created this blog. It’s my journal, just in a different form.

If you’re new around here, I’ve got a couple of things you can check out to better understand PKU, my story, and my approach to advocacy:

“My PKU Life”: My First PKU Film

“My PKU Life” was the beginning of my advocacy journey. I produced it in late 2011, and beginning in early 2012 I began traveling the world, sharing my story and producing other media about PKU.

I keep sharing this story for one reason—to encourage you to share yours. I never imagined that my story would reach as many people as it has. And your story can have a greater impact than you can ever imagine. You don’t have to broadcast it or share it on social media. Even if you just sit down with a friend in a coffee shop and share your experiences, it matters. Because you matter.

Regaining Hope: My Journey to Rare Disease Advocacy

This is the first episode of Never Give Up: A Rare Disease Podcast. I decided to open up about this story as I embarked on a new advocacy journey: mental health awareness. I don’t encourage everyone to share their mental health journey so openly. But it was something I chose to do so that I could move on from my past. It’s different in tone than anything I had produced for the community before, but it’s a part of my journey that I felt like I needed to share. And it’s true. All of it.

“For Katy”: A Film About Newborn Screening

Newborn screening is a human right. It saves lives. This film, “For Katy” tells the story of a girl born with PKU who did not receive newborn screening at birth. We share the same diagnosis, but have different lives. As long as one child falls through the cracks in the newborn screening system—a system that has saved lives but needs improving—we need to keep fighting, speaking, and showing up for those who need help the most.

A Story from PKU History: “When Are You Going to Treat My Child?”

I produced “A Story from PKU History: When Are You Going to Treat My Child?” in collaboration with Professor Anne Green, author of the book Sheila: Unlocking the Treatment for PKU, as well as ESPKU and Birmingham Children’s Hospital in the UK. It tells the story of the development of the initial treatment for PKU from the perspective of Mary and Sheila Jones. This story is often told from the perspective of the doctors at BCH who developed the ground-breaking nutritional therapy for PKU. But that’s only one part of the story. The reason they pursued it at all was because of the determination of one mother who would not give up on her daughter.

On a personal note, in 2026 I received the Sheila Jones Award from ESPKU. They created the award in 2017 to honor patient advocates who have made a lasting contribution to the PKU community, and winners are selected by representatives of Birmingham Children’s Hospital. I received the award at the 2026 ESPKU Conference in Copenhagen, Denmark, and you can read more about that here.

The award is deeply personal to me, and means more than I can express. And that’s because of the legacy of Mary and Sheila Jones. As I shared in my acceptance speech, we would not be where we are as a PKU community today without their sacrifice.

So my request to you… Please take some time to learn about them. You can either read or listen to their story on my website or buy the book by Professor Green.

And wherever you live in the world, please pass their story down to your community.

Mary and Sheila deserve to be remembered. Always.

About My Journal Entries

I treat this site as an extension of my journal. Sometimes I write about PKU. Sometimes I’m raising awareness of newborn screening. Or I reflect on living with a rare disease. Often I explore life through the lens of mental health.

But why do I do it?

I’m not trying to amass clicks. I’m not trying to increase views on my videos. I’m not trying to boost downloads of my podcast.

I’m not trying to boost “engagement”. Or even spark conversations.

I’m trying to ignite reflections in your heart and mind. Sometimes I share deeply personal stories. Other times I might discuss sensitive issues.

And you might not want to share or talk openly about them. I get that.

But society is screaming at us that we are unbreakable machines who should be on a never-ending adrenaline rush.

And all I’m trying to do is encourage you to slow down, breathe, and think about your life.

If you’d like to connect, my socials and email links are in the sidebar on the right. Feel free to reach out. I’m always up for a good chat.

Thanks for stopping by.

~ Kevin

ABOUT PKU JOURNAL