Anna’s Aunt Lizzie is featured in a new video produced by Barcroft media, a popular producer of incredible videos shared on youtube and hundreds of media outlets. Their youtube channel alone has over 3 million subscribers.
Within an hour it had nearly 1500 views already. We’re proud of Lizzie for her bravery and willingness to share her XP story with the world.
And check out Anna’s little kick at the end of the video!
It was surreal to watch Dateline on Sunday, June 14th. The second half of the program (Beginning about 22 minutes in) told the story of the Feltner family, another Utah family that deals with Xeroderma Pigmentosum.
Dateline did a great job explaining the realities of living with XP.
I urge you to watch it.
The video is online for free until 07/19/15.
Here is the link:
http://www.nbc.com/dateline/video/dateline-june-14-2015/2871922
Our friends across the pond are doing something truly incredible for those that live with Xeroderma Pigmentosum.
I don’t think I have words to express how wonderful I think this is, so I”ll just invite you to visit their blog and read about what they are up to:
Yesterday (Oct 16) my first episode of Who Wants to be a Millionaire aired on TV! It was crazy hearing Terry Crews say “My Man, Josh Tenney!” and see myself on there.
I got this one right!
I answered four or five questions right on the first day – but then time ran out.
I’m looking forward to seeing today’s episode -where I get to mention Xeroderma Pigmentoum (XP) and tell everyone what I’d do with a million dollars!
See when it’s playing near you: http://millionairetv.dadt.com/local-listings/
Here is a preview of my day #2:
This post will be a departure from what we usually write about here on AnnaLiberty.com. It’s the story of my appearance on “Who Wants to be a Millionaire?”. It’s long, but I think you’ll like it!
I grew up watching game shows with my family, and my dad always told me I should be a contestant and win some money! So when I heard that auditions for “Who Wants to Be a Millionaire” were coming to Salt Lake City, UT (not far from home), I knew i had to try out.
I took a Friday off work and went early that morning with my brother to the audition. We arrived and were greeted by some young, enthusiastic producers. A large group had already been there before us. We watched them leaving with their free “Millionaire” t-shirts. Some grinned and had a spring in their step, others looked disappointed. They had just taken the first step: THE TEST. We were next.
Remember back in high school, when you had to sit down with a #2 pencil and a scan-tron sheet? “Millionaire” auditions start the exact same way. The test had thirty questions, and we were given ten minutes. (For you non-math-majors, that’s only 30 seconds per question!)
The test had questions from a variety of topics, just like the show. Math, history, geography, and a lot of pop culture. I raced through the test, answering all of the questions I knew first. Then I went back and made my best guess on the others I didn’t know. I finished just before time ran out. Our tests were slipped into numbered envelopes. As they took them to be scored, we were told to remember our number. Then, we waited.
The producers came back and read a list of numbers. My number was included! I think there were about 40 or so people in my group, and about 10 of us passed the test. Those who passed were invited back later that day for an interview.
So, I went back to my brother’s house and started working on some paperwork they gave us. The first part was legal and contact stuff, and the second was all about finding out if I would be an interesting enough person to put on the show. Here are a few of the questions:
I did my best to provide the most hilarious, interesting, and clever answers I could think of. I told them about my acting career as a kid, my obsession with Disneyland, and of course, being Anna’s dad and her XP condition.
When I came back for the interview, a large group of us (about 40) were herded in to a room where there were three tables on one side. These were the interview tables. We were called up one at a time, and the producer read over our answers to the above questions. When my name was called, I jumped up and made my way to the table with extra enthusiasm. He was impressed with my interesting stories and told me that I had made it – to the SECOND interview. I was sent down the hall to wait for my second, video interview. That interview was with two producers, in front of a camera, where they asked me some questions as if I were on the show. When I got each one right, I shouted and jumped and reacted like a crazy guy. They ate it up, and told me that I’d hear back in a month or so.
On Monday morning, less than 48 hours later, I was shocked to get a phone call from “Millionaire.” “Would you be able to be in Stamford, CT in two weeks to be a contestant?” My answer was YES! I made arrangements, and started cramming my head with as much trivia that I could take.
We arrived in NYC a few days early to see a Broadway show and take in the sights. My sisters Stephanie and Katie (and Katie’s husband Russell) joined me on the trip. I got a good night’s sleep before the day of the taping, and arrived ready to win big! Upon arrival at the studio, they took away our cellphones and anything we brought with us, and we were told a lot of things by their lawyers and producers. After spending all day in the waiting room with the other contestants, I was told that I’d have to come back the next day. I didn’t sleep as well that night.
Me and Terry, moments before taping my episode!
I came back to the studio the next morning and quickly was sent to hair and makeup. I was taken backstage where they put a mic on me. My sister Stephanie was in the audience. Before they called me up, Stephanie got the crowd chanting my name! I came out pumped and ready. Terry Crews (this guy) is the new host. He called my name, I went to the podium, and….
…you’ll have to watch the show to see what happened next!
My episode is airing on Thursday, Oct 16th. I’m the last contestant on the show that day. You might want to watch on the 17th, too!
Go to http://millionairetv.dadt.com/local-listings/ to find out where and when Millionaire airs in you area.
I finally finished this little project, and I’m excited to share it with you. I wanted to make a short informational video about Anna and Xeroderma Pigmentosum. I’ve added it to the home page of http://www.annaliberty.com.
I hope you like it. If you do – please share it with your friends!
San Diego doesn’t seem like the ideal place for someone with XP. Lots and lots of sunshine! However, with the right protections in place, San Diego would be just fine. It’s a great place for Andrea Monroy, a girl we met at our trip to the XP Family Support Group meet last year.
Andrea was interviewed by the local ABC news affiliate recently. They put together the BEST news report on XP that I’ve seen.
Please watch and share this video.
While attending the XP Family Support Group conference, Anna’s aunt Lizzie appeared on the local Fox station. You can watch the clip here: http://fox40.com/2012/11/12/xp-family-support-group/
UPDATE: The full documentary is streaming free on PBS.com. Click here to watch!
Debuting on Thursday, October 18 is a new documentary titled “Sun Kissed” that tells the story of one family’s experience with Xeroderma Pigmentosum. I can’t wait to watch it!
You can check your local listings here to see when it airs on your local PBS station.
The children with XP in this movie have a type of XP that’s a different than what Anna has. Anna’s is XP-D, and does not cause neurological degeneration. But Anna and the kids in the movie both have a 10,000 times higher chance of skin cancer due to their Xeroderma Pigmentosum, and both need to avoid all unfiltered sunlight.
Here’s a trailer for the movie:
I look forward to learning more about XP and learning about the plight of the Navajo tribe.
I hope you will watch it, too. And share it with your friends!
On Sunday, I received an email from someone at the Global Genes Project, one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare and genetic disease community.
They had chosen Anna’s story to be featured on their facebook page (which reaches over 22,000 people) and on their website. I was thrilled to see the post on facebook receive hundreds of “likes,” and dozens of shares and comments.
Here is a look at (and link to) the article on their website:
I’m grateful to the Global Genes Project’s efforts to support and raise awareness of rare conditions like XP.
Anna Liberty 