I have a philosophy that guides my PKU advocacy—help and move on. This is a reflection on how to stay focused on what matters—helping people.
Help and Move On: A Philosophy for PKU Advocacy
As I write this, I’m flying back from the 2025 ESPKU conference in Hamburg, Germany. And today, I’m reflecting on my conversations with friends over the last few days.
Some of those conversations revolved around the nature of PKU advocacy.
Over the last few years I’ve shared a lot of the guiding philosophies and core values that drive my advocacy. One of those articles was called “Advocacy is Social Justice”, and it’s an in-depth analysis of what I think advocacy is and why we fight for change.
But there’s a subject that I’ve only begun to unpack. And that’s the cost of PKU advocacy.
I began exploring this in a story called “The Emotional Toll of Rare Disease Advocacy”. But I’ve been reluctant to talk about it more. Because I didn’t want people to think I’m trying to draw attention to myself.
But conversations over the last few days at the conference made me realize that I have experiences that might help people, and so I think I need to share this.
When you put yourself out there and become visible as a PKU, newborn screening, or rare disease advocate, it can be overwhelming. People in our communities are hurting. Sometimes they are desperate, and they look to someone to give them some hope.
And they share things with you that they might not have told anyone else. They share heavy stories about their struggles, loss, and grief. Or they ask for help that you cannot possibly provide. And that can be a heavy weight to bear.
This has been a consistent struggle for me. I am thankful that my work has helped people. But sometimes the expectations placed on me feel impossible to bear. Especially when I’m dealing with things in my personal life away from PKU advocacy.
So, over the years I’ve had to figure some things out on my own. I’ve kept them to myself for many years, but since I see so many amazing people on social media becoming more and more visible in PKU advocacy, I felt like it was time to share these thoughts openly.
A few years ago we interviewed a wise person for a project at work, and he said something I’ll never forget. I’ll paraphrase: “Those seeking the deepest parts of their humanity will never find it until they give to someone else who cannot give in return.”
That resonated strongly with me. It not only reflects why I approach advocacy the way that I do, but how I maintain my mental health.
I give freely.
I consider my personal advocacy work a second career. It’s just one I don’t get paid for. I have my limits, I can’t do everything I’d like to do, but I do what I can and I do it freely.
Because any form of advocacy is ultimately a gift. Even if you’re being compensated for your time, none of us have to do this. We aren’t being forced. It’s a gift. And it’s one we choose every time we speak up or take action.
And so, any of us in advocacy are united by a similar goal—we want to change the world.
We often think that change must be systemic. That only grand, sweeping actions that force societal change are what matter. Now, of course that kind of change is important. But I tend to see the world from a different perspective from others. So my approach differs.
I focus on individual people. Because people are all that matter. And I firmly believe…
If you change enough people, you change systems.
And I’ve found over the years that the best way to change people is one person at a time.
Advocacy is about the masses. But it’s also about individual lives. And we simply must not forget the value of a single human being in our mission to change the world.
That’s the abstract idea behind my PKU advocacy. But what does this look like in concrete terms?
Well, I’m a creative professional, and so since 2011 I’ve used those skills to share ideas about PKU, newborn screening, rare disease, and mental health advocacy. I’ve used video production, social media, and websites to reach as many people as possible.
But privately, I’ve had conversations with thousands of people in our community over the years. Sometimes it’s a single interaction, and I try to share something that might help them for years to come.
And sometimes those conversations develop into advocacy collaborations. But with a few people, these chats have led to lifelong friendships and the core of my personal support system.
But there is one approach that guides me no matter the nature of the interaction.
Throughout my career there has been a consistent topic I’ve explored—trauma. Whether that was when I worked in the news filming crimes, accidents, and natural disasters, or these days as our team at work produces short documentaries about recovery from trauma, there has been a consistent theme—shocking, life-altering events and how humans cope with them.
This work has led to meeting countless first responders, observing how they work, and filming interviews for projects. And I’ve consistently heard paramedics discuss how they remain focused on their work…
Help, and move on.
Just help the next person in front of you, and move on to the next.
That’s how they compartmentalize and keep helping people even when the work is draining. I’ve seen the anguish in their eyes as they recount the stories that remain with them years later. And that resonates with me because I have my own stories like that, including those I’ve experienced during my PKU advocacy journey.
We don’t talk enough about the personal cost that comes with helping people. And how necessary self-care really is.
Sometimes that comes through emotional sensitivity and a willingness to be vulnerable. That’s what I’ve explored over the last few years.
But paradoxically, it also comes with knowing when to compartmentalize, focus, and commit to the task at hand.
These recent conversations about PKU advocacy helped me realize that I should share some of these ideas I’ve learned in my journey.
This is my guiding philosophy for PKU advocacy—help, and move on. Just help the person in front of you, and move on to the next.
If you do that enough times, the individual lives you change branch out and have an impact on the world that no one can measure.
We often get so focused on measurable results and forget the value of immeasurable impact. There is simply no way to measure the value of a changed life.
And changed lives change history.
We shouldn’t do this for personal visibility. It’s not about us, but rather the people we help.
It’s not about becoming celebrities in the community. That’s not the point. It’s a useful tool to help people, especially if you use it to shine the spotlight on issues that matter. Or better yet, other people who are doing amazing things and deserve the recognition. But celebrity cannot be the purpose. There must be more than that.
Celebrity is about glory. Service is about honor. And I choose to focus on service.
Because people in our community need help. We help them by serving them, and when we serve them we can have a profound impact on the course of their lives.
That’s not the ethos of social media. What used to be about human connections and personal relationships has become an entertainment platform with one goal—to get as much engagement as possible. More views, more reactions, more shares—more, more, more.
But that’s focused on visible, measurable results. Quantity of engagement, not quality of engagement.
I no longer do what I do for visible engagement. I do it for the intangible impact people share with me when they comment on a post or send me a private message.
I do what I do to try to help people who are hurting find some hope.
And hope is immeasurable.
We advocate not just for the ones we know about, but the ones we don’t.
Not just for the ones who respond to what we say, but the ones who silently watch.
Not just for the ones we get to know, but for those we never meet.
Much in life is measurable. But much isn’t. And the impact you can have on human lives is priceless…
If you stop worrying about the score card, and just keep your eyes focused on what matters.
Helping. People.
Help them, and move on to the next person.
Help. And move on.
The program from the 2025 ESPKU Conference held in Hamburg, Germany. I’ll explore topics and share information in upcoming articles.
I’ve been thinking about all of this these last few days while at the ESPKU conference. Conferences like this are important because you get to learn the latest ideas in PKU treatment and care.
But they are equally important because of the human connection. The deep, lasting friendships that you can make. The first ESPKU conference I attended was held in Berlin in 2015. The friendships I made there have endured, and grown deeper over time.
The same goes for back home in the US. My involvement in the community there began in 2012 when I first encountered the National PKU Alliance. It’s not just a path of public service for me. It’s how I met friends and developed a personal support system.
My encouragement to you, no matter where you live in the world, is to find a place where you can serve, if you are able to serve.
It can change lives and give you support you never knew you needed.
I feel like that depth of human connection is missing these days. Society is screaming at us that we must do more…
Instead of simply learning to be better humans… together.
That’s all I’m trying to do. I’m trying to be a better person, and help others along the way. And I do that by trying to remain focused on what I think matters most.
Helping people.
Help, and move on.
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