Bringing EB Awareness With Robbie Twible
by Alex Garrett
welcome a family friend , Robbie Twible, who discussed his journey living with Epidermolysis Bullosa. The below transcript put together by Rev Transcripts!
Link to the full interview here: (https://www.spreaker.com/user/agsportshournyc/12-17-20-adapting-with-robbie-twible)
I remember when you were just a little kid running around the campus at Queens college and doing the athletics. Now you are in college yourself, first of all, tell us your journey and then how things have been.
So right now I’m at Farmingdale State college. I’m studying sports management and I actually just completed my first semester today. It felt like Groundhog day with the COVID.
If you’ve ever been to Queens College Softball on EB Awareness Day, that’s a day, we honor Robbie,. How are you doing with the EB? And maybe give us a little bit about the condition as well as how you’re overcoming that to do college, to do life, to do the podcast.
Yeah. I was born with Epidermolysis Bullosa. So like Alex said EB for short. It’s a rare genetic skin disease where I’m missing the glue that holds the layer of the skin together. So any friction or any, any trauma to the skin comes off very easily. Over half my body is missing skin. I’m doing well. I’m blessed because there’s like clinical trials, over at Stanford university in San Francisco. They injected collagen seven into the skin. They actually grasped it and that’s, and that’s, uh, I’m still in a process of that as going well, you know, I just take it day by day.
Talk about Ellen, I mean, she was, she’s a very influential part of your life. So she had you on, am I right?
Yes. I have to mention Justin Timberlake. Such a nice guy, came backstage and met with me for 10 minutes. Talking Broadway and just reall nice. And, uh, that would never have happened without him. It was my dream to meet him and to meet Ellen and to be on her show. His publicist has her friend, a producer on the show and she told him my story. And so my mom got a phone call from the Ellen DeGeneres show saying, Hey, uh, we heard Robbie’s story. We would love to have you come down here just to have you in the audience.
it was a big commitment for my parents because they had to pay for, uh, travel and hotels. So just to have me sit in the audience that was, you know, in their mind, that first was a big commitment on their part, but thank God we did. They hid me in the green room and they were prepping us for questions. They were prepping us and told us they were going to do it as we’ve just been featured on EllenTube. We went into the audience. I knew something was up when Ellen went on and invited me up with my family. And it was a fortunate experience. Uh, I’ll never forget. And she actually even invited me back for her famous probate giveaways, which was even, uh, another experience. That was amazing.
You mentioned your parents and obviously Rob, um, has been a very good father and you’re your mom as well? A great mom. What does, what have they meant to you in your life so far in your very young life? I should say,
Oh, everything. Uh, my parents always support me and they’re always there for me and they care of me. I don’t have a nurse. Without them. I, you know, I really wouldn’t be where I am today. I would not, I would not be in a good position. They are on top of taking care of me and my sister.
Alex Garrett :
There’s people out there who are overcoming daily and Robbie Twible is no exception now for the fun part, your podcast. Tell me about it.
So I started at the beginning of the pandemic. It’s called Robbie interviews. It’s found on YouTube and it’s basically like a zoom interview. 20 minutes each person, which is sports people, uh, like, basketball head coach of Hofstra. And Iona head baseball coach, Paul Panik, but then, uh, we transitioned to, Survivor season 39 Winner, Tom Sheehan. I’ve done 11 of them, uh, as the episodes go on, I’m sure you find this out too. It’s hard to get people to come on. Uh,
I know Robbie you’re out there, any organization that you think you could recommend that you’ve worked with as well to help the cure for EB.
Yes. It’s called EDRP, and they really do tons of research. They are really the backbone of research . Uh Keneally they are funding many, many projects that are really looking good, you know, getting cures. So I would, if you could donate that really mean a lot. And for all the other kids who suffer from EB, that would be great.