Updated: Nov 14
Jacob Venditti is a Cystic Fibrosis patient and advocate who started the Live Fearlessly Foundation. The following is an excerpt from a recent conversation I had with him. Here, Jacob discusses his roots, artistic background, and his love of the ocean---which have all helped steer him toward philanthropy.
Jason: What age are you, may I ask?
Jacob: I'm 28.
At what age were you diagnosed with Cystic Fibrosis?
Jacob: When I was born. I came out and I was blue.
They knew something was wrong.
I was actually on a lung transplant list for a while; wasn't able to hold down a job, anything, because I was so sick; in and out of the hospital for weeks at a time, all the time. Spending all that time in the hospital, I would make artwork, and then have an art show at local venues to my town (after being in the hospital) to make money to pay my bills.
And, at one of the art shows a friend came up to me and said, 'We should turn this into a nonprofit. And then, you'll be able to receive donations and not just sales for artwork.' We did that and one thing turned into the next, and I got a lot healthier and I kept running the foundation. Now, we're supporting and funding people with CF to do any sort of activity.
I'm a big surfer, and so, that seems to be the one that's catching the most attention lately. We've been paying for surf lessons for people with CF, and buying them boards and, you know, hooking them up with whatever they need to get that motivation to get out in the ocean.
What are your earliest memories of being near the water? What drew you to surfing, in particular?
Jacob: We were living in Fairfax, Virginia, where I was born. My mom saw this article about some people in Australia, and how they had CF and they were surfers, and how much it helped their health out. She said, ‘We're moving to the beach,’ and she moved me to the town that she went to college in---Wilmington, North Carolina.
And I was in first grade or something--so, very young---and we’d just go to the ocean and boogie board. And then, eventually, somebody gave me a surfboard and I started surfing. It just became a passion for me. I started winning contests and I was getting endorsed by companies like Body Glove, to travel the world and surf. I started traveling all around Indonesia, Hawaii, Mexico, all through Central America, to chase world class waves.
I got to a point, I was so sick I couldn't surf anymore. It really tore me up. I figured, I wanted to do something---like making this nonprofit: the Live Fearlessly Foundation.
Tell us more about Live Fearlessly. How does living with chronic illness inform the organization?
Jacob: Well, my first-hand struggles, you know, first and foremost. I'm able to relate to other people with CF, especially parents that have kids with CF. They can reach out and ask me whatever they need to know about---you know, growing up with CF, things they're gonna run into that can be difficult, what route to go on certain issues concerning their children's health, etc.
I understand you've gained access to triple-combination therapy [which addresses the root cause of CF]. When did you start taking Trikafta?
Jacob: I started taking Trikafta as soon as it was approved by the FDA. And at that point, I was on a lung transplant list. This medication, you know, improved my health drastically, within a month; and I was taken off of that. I haven't been back to having a hospital admission since---and it used to be a few times a year.
Being given a second chance at life, it made me so passionate about helping out others that were in the shoes that I was in for so long; like, I feel for that; because I know what it’s like to be in that situation. And that's why I feel it’s my duty in life to help others out.
It looks like you're doing wonders with LFF. Where do you see things going from here?
Jacob: We want to fund all sorts of activities, and not just surfing. So, what I've found a cornerstone to my health throughout the years is having activities---even when I'm sick---having something to look forward to. Even something you can do while you're in the hospital: Play guitar, do Artwork; whatever it is, we want to help.
What can you tell us about upcoming events with Live Fearlessly...
Jacob: On November 19th I will be hosting a regional surf shop challenge. We will also be having a fundraiser after the contest. If anyone is interested in helping, raffle items would be a big help to raise money for the foundation.
Jason is a filmmaker, brand ambassador, writer, illustrator, and is currently pursuing a degree in the field of I.T./Cloud Computing.