This is my story. This is My PKU Life. A film I produced in 2011. It’s amazing to see the impact it continues to have. It exceeded my wildest expectations. I keep sharing it because it reminds me of the power of telling your story—you never know who will listen.

My PKU Life

One night in November 2011 I turned on my camera and shared my experience of living with Phenylketonuria (PKU). And my life changed.

I didn’t think it would be widely viewed. But it went viral in the PKU community. It launched a new phase of life for me, one involving a lot of travel, speaking about PKU and newborn screening, and producing more PKU videos.

If this film has moved you, please consider watching another one I produced called “For Katy”. It tells the story of a girl born with PKU who did not receive newborn screening. As long as one child falls through the cracks in the newborn screening—a system that has saved lives but needs constantly improving—we need to keep fighting, speaking, and showing up for those who need help the most.

I’ve been producing stories for the last 20 years, and this is still the one that I’m most proud of. Because I’ve heard from a lot of people who were moved by the story, and that’s what you love hearing the most as a storyteller.

That the story you shared matters.

If you’ve never seen it, here it is. I’m a different person than I was in 2011. But this video reminds me of the importance of advocacy… It’s telling your story because you believe in hope.

Hope that things will improve for you.
Hope that things will improve for others.
Hope that by sharing your story, you won’t feel alone anymore.

Everyone matters.
Every voice matters.
Every story matters.
Every person matters.

And I share this story to encourage you.
That you matter.