For some UW Flexible Option students, getting a bachelor’s degree in business administration through UW-Parkside is the path to a promotion, a career in finance, or a stepping stone to the MBA. For Atlas, it’s been the catalyst that’s helped him start a charity to benefit those suffering from a little-known genetic disorder that currently has no cure.
Atlas, who describes himself as someone who has always had an entrepreneurial mindset, co-founded a charity that seeks to increase awareness of and support for individuals with rare diseases–specifically, Morquio Syndrome. The charity, Fighting For Freya, honors Atlas’ niece, who was diagnosed with Morquio as a toddler.
“Since inception, we’ve raised just under $40,000,” Atlas says. “So it’s growing, and quickly.”
Morquio Syndrome is a genetic disorder that occurs when the body cannot break down sugars. As a result, those with Morquio experience toxic buildup in their bones and organs, causing skeletal and other abnormalities. Many Morquio families struggle to get diagnosed; Freya herself visited seven pediatricians before her parents learned they both are carriers of Morquio, despite not having the syndrome themselves. Though there is no cure, some patients undergo enzyme therapy, physical therapy, and use mobility devices, including wheelchairs, to manage their condition.
Path to Hope: Raising Awareness Through Livestreaming
Fighting For Freya recently hosted the Path to Hope, a 7,600-mile trip in which Atlas and Freya’s father, Kevin, drove cross-country and livestreamed their experience 24-7 while talking about Morquio. The trip had over 23,000 viewers on Twitch.
During their journey, Atlas and Kevin interviewed Sheri, a woman living with Morquio Syndrome in Oklahoma, and several physicians working on research and treatment, including Dr. Paul Harmatz at the University of California, San Francisco, and his colleague, Dr. Ellen Fung, along with Dr. Klane White at Children’s Hospital Colorado.
Atlas and Kevin camped out during their trip while visiting national parks and other scenic spots. However, Atlas was blown away by the generosity extended to them by friends he’d only met online when it came to accommodations.
“One of the coolest aspects of this was we had several campsites at state and national parks that we were staying at throughout the trip, but there were a lot of places we didn’t know where we were staying,” he says. “We went to a lot of different cities where people that I’ve never met before—I knew them online a little bit, chatting with them—welcomed us into their homes. ‘Guys, you’ve got a place to stay. You’ve got a hot shower, if you need to wash clothes, etc.’ ”
Because of its instant success, Path to Hope will be an annual event.
“Our goal is to build four events per year,” Atlas says. “These will not all be road trips. The Path to Hope will be the marquee event of the year, but then we can also have local fundraisers.”
Atlas, who previously worked as a truck driver, came up with the idea to livestream a trip on Twitch while talking about Morquio with Kevin. Atlas is an avid RISK player, and is part of an online community of gamers who stream themselves playing games. The RISK community immediately took an interest in Fighting For Freya during Atlas and Kevin’s test trip to North Carolina.
“We ended up raising over $7,000 in the test stream,” Atlas says. “And we had no expectations financially. It was just, can we do it? There were about 10,000 views on that video. Most people, if they put a first video on YouTube, you might get one or two, you know? It’s not a big thing. So I mean, it was amazing. That whole community came together and started spreading the message.”
“So we got really excited about it, and we decided to just go all in. We [decided to do] a big trip in April. That quickly expanded. The game makers of RISK is a company called SMG in Australia. And [when] they found out about it, they ended up putting it in the game announcement. So anybody in the world that opened the game, the first thing you saw was that pop-up.”
The RISK community also sponsored a Fighting For Freya charity tournament to raise awareness–an event RISK gamers came up with all on their own to complement Atlas’ efforts.
Fighting For Freya is a partner with the National MPS Society, which supports individuals and families affected by mucopolysaccharidoses and related lysosomal diseases. While MPS advocates for Morquio survivors on its own, Atlas said that Fighting For Freya wanted to do something a bit different.
“There was really a void in the awareness efforts because they are very well-established,” Atlas says. “They are funding research projects. They do events and bring families together. But I didn’t really see a large-scale national awareness movement. I was thinking, ‘How do I make the most return on awareness for as little money as possible?’ Streaming. Because I can literally take a message and reach anybody in the world. And I have essentially a tiny television station that can reach anybody. That’s where I feel like we could really help–that Fighting for Freya could actually make a difference.”
Moving forward, Atlas hopes to spend even more time with Morquio families and doctors on his trips.
“This first [trip] was a lot of driving. And so the one thing that we both kind of felt like we needed to improve on was when we met somebody, we were in a rush, and we didn’t have enough time with them. So moving forward, what we’d like to do is work with several hospitals. There’s Children’s Hospital Colorado, there’s UCSF in California … We actually made our very first contribution to Dr. Shunji Tomatsu at Nemours Children’s Health in Delaware. We’re probably going to be kind of pivoting toward doing events partnered with those hospitals. And then we can do a road trip, get our people together, and meet more Morquio families.”
He’s also glad that families who have been touched by Morquio now have a more established community.
“As [Fighting For Freya] grows, the families that are telling their stories finally feel seen and supported. When parents first find out that their child’s been diagnosed with Morquio, what they do is they’ll go Google it. And you’ll see some very scary things online about it. You see the average life expectancy is late 20s, early 30s, somewhere in there. It doesn’t have to be that way.”
“And because it’s a rare disease, [families] don’t know who to reach out to initially. So that’s another thing that awareness could help with. If more people were familiar with this, they could say, ‘Go check out Fighting For Freya.’ And then of course, we can get them in touch with broader communities.”
How UW Flexible Option Helped Atlas Develop His Business Skills – and a Nonprofit
While Atlas has experience in business, UW Flexible Option courses have helped along the way, specifically with accounting and marketing.
“I’ve started several businesses before,” he says. “And each one, I did better and better. But that’s where I was like, OK, I’ve got to get this thing incorporated. I’ve got to get 501(c)(3) status from the IRS. It’s a charity, which is a new thing for me. A lot of the courses that I was taking, accounting courses, honestly, I didn’t know about double entry accounting. In my previous businesses, I just made it work in QuickBooks where the numbers were right, but if an accountant looked at it, they’d be like, what is this? So I was able to keep our books correct.”
As for sales and marketing, Atlas was thinking strategically. “How do I approach businesses? How do I talk to an audience? How do I keep them engaged? I give credit to [UW Flexible Option] because that kind of strategic thinking is what led to this. I had to step back and say, OK, where can we make a difference? Because obviously, it doesn’t make sense for us to do the same thing that somebody like the MPS Society is doing. They’re already established doing it. So where is the gap? Where is a void that we can actually fill and help make a difference?”
Atlas plans to finish his business degree within the year, and then go to law school where he wants to work in the healthcare field.
“Whether that’s some kind of advocacy directly for families or whether that’s some kind of advocacy for policy and legislation that can help improve things…One of the things the MPS Society has been working on, and we’re getting involved with now as well, is [repurposing] approved drugs by the FDA. There are drugs that were designed for different purposes that are actually showing some promise for MPS diseases.”
Atlas says he would have never been able to establish Fighting For Freya if it weren’t for the flexibility of the UW-Parkside Business Administration degree program.
“It’s an amazing program. There’s not another program where I could have started this education journey and then said, OK, I need to skip class for a couple of months while I go build a charity and then come back, and it’d be OK. I’m in my late 30s now. If I were to go back to a traditional school setting now, I’d feel really out of place.”
Despite some of the seemingly neverending negativity in the world, Fighting For Freya is a constant reminder for Atlas about the positives.
“Path to Hope was so good for just me personally, my mental health, because it reminded me that people are good, and they want to help, and they have big hearts. You may not hear that on news or social media, but they’re out there, and they do care. So we just welcome everybody to be a part of that experience.”
Are you ready to learn more about how to make UW Flexible Option work for you? Connect with an enrollment adviser today by emailing flex@uwex.wisconsin.edu.