This past week I did a voiceover for the poem I wrote for the Positive Exposure gala. It was so [...]

It was my birthday on May 1st! First, on my birthday, I went to see my XP specialist, Dr. Cunningham. [...]

Yesterday was my sister’s birthday, so I thought I would tell you about her. Alyssa works at Freeform Television. I [...]

https://youtu.be/TCygSh7l0yo A poem celebrating the 20th Anniversary of Positive Exposure   See how you change!

I have Xeroderma Pigmentosum (XP). It affects about 300 people in the United States. Imagine how surprised I was sitting [...]

THE PREMIERE Last week, something crazy happened - I got invited to go to the premiere of the movie Midnight [...]

If you have read my book review, you know there is a new movie coming out called Midnight Sun. In [...]

Two weeks ago, I got to attend Rare Disease Week on Capitol Hill in Washington, DC, as a representative from [...]

The book Midnight Sun is told from the perspective of a girl named Katie who has who has Xeroderma Pigmentosum [...]

This week, I had a cold. My voice sounded really deep and groggy like I was a dude! One thing [...]

This past Thursday, I got to go to the Brad Paisley “Weekend Warrior Tour” Concert. I got to go because [...]

I had a great Christmas. One of my favorite gifts was a Positive Exposure sweatshirt. My mom had my name [...]

Hi! I hope everyone is having a good holiday season! I have some really big news for the blog! You [...]

On Thanksgiving morning, I love to watch the Macy’s Thanksgiving Day Parade. I like when they show bits of new [...]

One of my favorite things to do is watch college football; mostly the Sun Devils from Arizona State University. I [...]