PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for yourself, inspired by a decade of PKU advocacy and travel around the world.

SEPTEMBER 17, 2022

10:48AM

As I write this I’m sitting in a Panera Bread in Austin, TX. I’m down here filming a new project for the National PKU Alliance. I filmed last night and this morning, and I have a few hours before my next interview.

It’s been a while since I’ve had a trip like this. The pandemic really disrupted life, didn’t it?

I’ve got this trip and a few more like it over the coming weeks. And I’ve forgotten just how much I love doing this.

If you’ve read my recent articles (here and here) you’ll know that I’ve been in a reflective mood recently. And one reason for that is that this year marks 10 years since my PKU advocacy journey began. I released My PKU Life in 2011, but really 2012 was the year my life changed.

That year alone I went to Boston twice to speak and film at Cambrooke, the NPKUA conference in Cherry Hill, New Jersey, I was the keynote speaker at PerkinElmer’s annual newborn screening symposium in Finland, I went to Washington DC to collaborate with Association of Public Health Laboratories (APHL) on a newborn screening awareness campaign, and I spoke at a PerkinElmer newborn screening event in Curitiba, Brazil.

So I was busy.

But another reason that year is so special to me… I began the year on a diversion from what I consider my calling in life – storytelling. And I ended the year on a journey I never saw coming.

I’ve already written about how I was just coming out of a dark time in my life. But it was also a dark time for me creatively. I had gone from shooting and editing stories on a daily basis when I worked in TV news to a marketing job I wasn’t suited for.

I missed telling stories. And I had allowed these toxic words from someone I had respected to take all the wind out of my heart: “You are not a writer.”

But then in the period of a few months, I went from one of the worst periods of my life to the absolute best.

All of those trips, and the relationships I developed around the world, gave me the courage to leave a job I wasn’t suited for and go work for myself.

I did that for a few years before I landed my dream job. For the last 7 years I’ve been Senior Editor and Videographer at CRM Studios, in our North Louisiana office. They have been so supportive of my work and I could never say thank you enough.

So here I am now, grateful for every moment that I get to do what I love for a living, and support the cause that means everything to me.

If you know my story at all, you know I say this from experience: life can change in an instant.

We often think of that in a negative light. I certainly have.

But it’s true in another way. Your life can change for the better… sometimes it’s instantaneous, but sometimes it’s gradual.

I began 2012 isolated from the PKU community, but by the end of the year, I was traveling the world speaking and producing videos about PKU and newborn screening. None of that would have been possible had I not taken a risk, turned on the camera one night in November 2011, and opened up about living with PKU.

Maybe you’re not comfortable with advocacy. Maybe you wonder if anyone will listen. Maybe you’re not sure if you have anything to contribute.

You do. Because you have a story. And it matters.

I had no idea how my life would change after speaking up. No idea. And neither do you. But don’t let that stop you from doing something that can change you deeply.

My situation is unique, and I realize how fortunate I am to have had the experiences I’ve had. But your life can change, too. Because advocating for yourself wakes you up to the power of your own voice.

It changes you, and that’s the adventure that matters most.