Rare Disease Day 2024

On February 29, 2024—Rare Disease Day—I appeared on local media to discuss Rare Disease Day. Here is the video of that appearance on KTAL and KMSS.

Rare Disease Day 2024

On February 29, 2024—Rare Disease Day—I appeared on local media to discuss Rare Disease Day.

Anytime I can share our message to the media, I welcome it. But this appearance had special meaning to me.

Because 23 years ago I began my career in storytelling at this TV station. KTAL-TV is the NBC affiliate here in my town, and my live appearance was on their other station, the FOX affiliate KMSS. Thank you to the host of the program Loving Living Local, my friend Susan Kirton, for the invitation to appear on the show.

I appeared on KTAL and KMSS to discuss Rare Disease Day and share about my podcast (Never Give Up: A Rare Disease Podcast).

My wife came with me and took photos of the appearance.

My wife went with me and took photos while we were there. I don’t think she had ever stepped foot in the station. Back then, I kept my two worlds separate. Working in TV news is intense, and I didn’t let my family into that part of my life. They had no idea until years later what I witnessed on a regular basis.

But, back to the purpose of the visit. I shared about Phenylketonuria (PKU), but also shared some general statistics about rare diseases. When I originally created this blog I only shared about my rare disease. But over time, that vision evolved. And my podcast was born. While I speak and write about PKU regularly, I try to share universal stories that anyone with a rare disease can relate to. And it was an honor to share information about the rare disease life where I began my career in storytelling.

I’m sharing this here to encourage you… If you want to share your story with your local media, don’t be afraid to approach them. It doesn’t hurt to ask. It’s always great to time it with an event like an awareness day or awareness month.

Local anchors, reporters, and producers are always looking for a good story. And we have a great story to share. Plus, the have a LOT of airtime to fill these days.

You don’t have to share a lot of statistics if you don’t want to (but feel free to download the images above and share if you think it would help).

The power of your story comes through your lived experience. You might forget statistics, but you’ll never forget your story. And you are the expert on it!

But ultimately, you don’t have to go on TV or share your story publicly to make a difference. Because each of us makes a difference every day, just through living out our story and interacting with those around us.