From the time that Ryan and Ashley Sheedy's twins were born to the time 17 or 18 months later that one was diagnosed with Costello syndrome, an ultra-rare genetic mutation, they spent every week in a doctor's office.
At one point, their son Reynolds had 25 providers. That meant the Sheedys had to bounce from Arkansas Children's Hospital in Springdale to the one in Little Rock, and doctors at both were diving into his symptoms and trying to figure out what was going on.
After a while, Ryan Sheedy felt like a broken record, always repeating Reynolds' story. Hospitals, clinics and providers often use electronic health records as a way of tracking patient information, but that was not enough for families with medically complex children being seen in a variety of medical settings, making it still their responsibility to keep track of it all.
"Coming from the business world, my question was 'Why isn't there a better tool out there to manage information for parents?'" Sheedy says. "We left carrying binders, (had) Excel spreadsheets, notes on our phones, and things get lost in translation, like a game of telephone."
The more he got to know other families in a similar position, the more it stuck out in his mind as a big problem. He and other parents desperately needed a place to list all conditions, especially as they had new diagnoses all the time; a place to keep information on therapies, any special dietary needs and how to feed a child with a g-tube -- the surgically placed device for those who can't eat by mouth -- as well as any other medical devices and tools.
Sheedy teamed up with his friend Bret Koncak, who had spent nearly 20 years in information technology for healthcare, to create Mejo, which was made available for the first time in June. It's currently free and is being used by more than 600 families already. Sheedy spoke at the RARE Patient Advocacy Summit in San Diego last week.
"All of us need help organizing our health information in today's fragmented healthcare system," says Julie Walker, CEO of 479 Retail. Sheedy worked with Walker previously at Advantage Marketing Solutions in Bentonville. "But the challenge is exponential for parents, doctors and caregivers of a child battling serious and chronic health challenges. How do you get everyone on the same page and ensure every (one) has the same information?
"I think Mejo will dramatically change the quality of care and quality of life for families," she says.
"When you see someone doing what they're really meant to do, it's kind of magical," says Mejo co-founder Koncak. "That's what I see with Ryan and Mejo."
Mejo gives families a place to put all that vital information -- all conditions, all providers and their contact information, all special care or measures -- as well as offering the ability to easily send it in an email or via link in a text to new medical providers ahead of appointments, anyone involved in childcare or otherwise.
"The app is to organize, simplify and share information, but we're excited to one day offer ways to connect to other things: to schools, therapy, Medicaid, school nurses and community, finding others to chat with and find resources," Sheedy says. "It's a way to navigate and organize their journey beyond the chart, to tell the story that's not just their diagnosis."
Perhaps most importantly, Mejo also gives these parents the ability to write their family's own narrative, personalizing it as a reminder that the little guy or girl going through everything is much more than a diagnosis.
"It's a fun infographic on a kid that wasn't just 'I take these seven medications and see these 20 doctors and specialists and have therapy,'" Sheedy says. "Like 'I love Blippi, I love purple, I use sign language, I'm non-verbal, I eat with a g-tube, and we look at holistic medicines and root causes."
Parents can add helpful ways to connect to their child, like "loves high-fives" or their preference to hear a song before having an injection or procedure.
Koncak and Sheedy solidified the idea and began to build it together, conducting most of their meetings through Zoom since Koncak lives in Kansas City and Sheedy in Centerton.
"I thought I needed a co-founder with the same story," Sheedy says. "But you need someone opposite of you. Bret brings credibility in his healthcare and record experience. He knows tech and is detail- and process-oriented."
After they got into the process of creating Mejo, Koncak's son was diagnosed with a rare condition also, so both founders feel they can really speak to users on a personal level about navigating their journeys.
"We wanted to make it simple and useful, instead of complex and comprehensive," Koncak says. "Usually (these records) are focused on the provider. We took a different perspective approach of usefulness for the caregiver." That meant giving them the ability to include important steps for daily life. Not simply the medicine and the dose, but the method of giving it to the child, such as mixing it in applesauce to help it go down easier and rewarding them with a Skittle afterward.
A total of 30 million Americans have rare diseases. A rare disease is one that afflicts less than 200,000 people. The figures were incorrectly stated in Sunday's edition of Profiles.
In Sheedy's son's case, he is one of 1,000 American children with Costello syndrome, a condition that affects many different parts of the body and includes developmental delays and some distinctive facial features.
Connecting with others and empowering them with an easier way to share information has been a meaningful ride for Sheedy. Each time he gets a message from parents saying the app worked in their favor that day, it spurs him to keep on, making the new and necessary tool readily available to those who need it most.
CONNECTOR OF PEOPLE
One of Ryan Sheedy's greatest joys is in connecting other people. It's one of the first qualities his wife Ashley noticed about him and something that he gets from his mom Brigid, who he says is a bit of an unofficial mayor of their small hometown in Pennsylvania. Sheedy describes her as someone who is intensely personal, loving, caring and fighting her own battle with MS.
Young Ryan grew up just east of Pittsburgh as the oldest of the family's three boys, with younger brothers Matthew and Andrew. Once most of them had left home, their mom started working as the executive assistant for the chancellor at Pennsylvania State University. She thrives on the connectivity of people and even now will send fresh college grads Sheedy's way if they happen to be setting up in Northwest Arkansas.
As a boy, Ryan played lots of sports, especially golf, and his first jobs were at his father's construction company. Roofing was hard work, but the business has been in the family for four generations, more than a hundred years. As a business owner and with a seat on the board of directors of a local bank, Sheedy's dad had strong ties with the community. Sheedy assumed for some time that one day he would follow in his father's footsteps and take over the business.
School had never been his strong point, so college hadn't been his first aspiration. Only once his parents told him a college education would be required before he could take over the family business did he formulate a plan to attend. Sheedy opted for Robert Morris in Pittsburgh, where his parents met. It was there that he fell in love with business.
Ryan's first job out of college was selling school supplies. Next he moved to Philadelphia and worked for a nonprofit, followed by major gift fundraising at Pennsylvania State University. An opportunity at a global nonprofit in Springfield, Mo., brought him to this side of the country, where he bounced around: Dallas, San Antonio and finally shopper marketing and enterprise strategy for a vendor in Northwest Arkansas.
When Julie Walker met him at a conference supporting UA entrepreneurs, they spent most of the evening talking.
"I was impressed by his ability to engage with professionals much more experienced than he, his standout social skills his incredibly broad and diverse network and his ability to connect strategic concepts from various sources into a new way to approach a problem," Walker says. She hired him as fast as she could. "Ryan is a problem solver, networker and collaborator who is relentless in pursuit of a better way to do, well, anything."
At Advantage Marketing Solutions, where Walker was president at the time, Sheedy was an ardent advocate for his clients, she says, and quickly built relationships with all agency players and set the stage for resourcing on his projects that went above and beyond.
"Along the way, he was thinking differently, asking tough questions and challenging the current approach, particularly when it was ineffective or inefficient," Walker says. "I have always admired his drive, but it's his compassion for and generosity to others that has sustained our friendship."
Sheedy says each one of his career moves funneled into what he's doing now with Mejo, but he couldn't have gotten where he is without his parents.
"They encouraged me to do what I'm passionate about," Sheedy says. For each job, "they never asked about what the money or pay would be, it was always 'Are you going to love it? Are you happy doing that? We're proud of you.'"
Though he didn't expect to land in Arkansas, it's become the second longest place he's ever lived because of a chance meeting after a Razorback tailgate. Ryan was at Farrell's on Dickson Street when a friend came in with Ashley. Immediately setting out to impress her, Sheedy started name dropping and boasting about his position of selling to Walmart associates. He wasn't expecting her to level back with the news that she too worked for Walmart, so what was he selling, exactly?
They became close quickly and after a few months, they were done being friends. Sheedy knew it was the end of his bachelor days, and six months later they were married.
Ryan and Ashley knew they wanted to start their family right away, so after a small whirlwind destination wedding in Sonoma wine country and a honeymoon in South Africa, Ashley became pregnant with their twins Campbell and Reynolds. Until the boys arrival, the couple wasn't aware of any complications. The first thing they grieved was the loss of their picture of welcoming their babies to the world. Instead, one was rushed to the NICU.
"You want to have a beautiful moment with your baby on your chest, with your spouse, but (instead) he had to be intubated and the next time we saw him, he was in a container, interacting like E.T., touching their fingers," Sheedy says. "The joyous time was put on hold."
Reynolds spent 103 days in the NICU. The couple had to make hard decisions, one of the first being to split duties since Reynolds needed to see a specialist in Little Rock. Ryan would take him there, and Ashley would stay with Campbell back at home.
During those long stays apart, Sheedy's friend Ted Fox would drive him down to Little Rock or meet him there.
"Ryan always seemed to be that extremely optimistic, see the positive in stuff (person) and lo and behold how this unfolded, he was just all in from the beginning with his kids," Fox says. "It's remarkable."
Fox admires how Sheedy has taken that optimism and the desire to have better efficiency for parents and caregivers and used it to help others around him, not just his own family. Meanwhile, he says, following him on social media is an easy way to get a big dose of that goofy, upbeat demeanor.
"Whether it's Cinco de Mayo or some golf event where he dresses up like 'Daddy Caddy,' he just makes it as enjoyable and fun as possible and documents all of it, because he wants his kids to know he cares," Fox says. "Whether Mejo turns into some big business or not, the value it's already delivered to parents like him going through the same thing is awesome in itself."
"My favorite memory of Ryan was in the early days after Campbell and Reynolds were born," Walker says. "He'd send photos from the hospital, oozing with fatherly pride. It was clear to me that he was already packing gigabytes of information into his smart phone, interviewing every medical professional he came in contact with. I knew he'd use his amazing skills to navigate and manage Reynolds' care and turn his experience into a system that could benefit others."
For a while, Sheedy kept up his sales job in combination with being Reynolds' caregiver, but it got increasingly difficult to do both. Then, at the same time that the family's nanny handed in her two weeks' notice, Ashley received a promotion at Walmart. It would mean more travel for her, so Ryan was needed more on the home front.
"I wanted to be a CEO, a business leader with a big company, TED Talks, the whole spiel," Sheedy says. "Putting that on hold to take care of two little guys, one who at the time had no diagnosis and lots of complications, was a real change in life."
With time, Sheedy adjusted and came to see it as a compliment to step into a role similar to the ones that his mom and mother-in-law had. It also gave him the freedom to explore building Mejo. In its earliest iteration, Sheedy built a template in PowerPoint to keep doctors' names and phone numbers in one place. Then, when he and Koncak had a beta for the platform, Mejo became a PDF that would populate, but the information was not saved for the next visit, leaving them with the same problem of reentering and repeating information each time.
Koncak leaned on his knowledge of healthcare IT gaps to improve upon it until they got to where they are now, which is harnessing their new tool to give parents something of critical importance: to let them save time, access their information anywhere and give them the peace of mind to be able to remember everything, because it's a lot.
"To simplify is empowering," Koncak says. "Ryan's insatiable energy and his passion shines through. His desire to help others created something that was intended to help him, but he connects with people and it drives him."
Ryan Daniel Sheedy
Date and place of birth: May 19, 1982, Altoona, Pa.
Family: Wife Ashley Gibbs, children Reynolds and Campbell (4.5 years) and Mackenzie (20 months)
My favorite place in Northwest Arkansas: Thaden Field. The boys love to watch the planes. Plus I have an itch to learn to fly someday.
People might be surprised to find out I: Didn’t talk till I was 3. I haven’t shut up since.
The question people ask me the most: When do you sleep?
My hope for Mejo is: to help caregivers make their life a little easier. I know how hard it is.
A typical Saturday night for me includes: relaxing.
The last show I binged on television was: “Dino Dana” and “Blippi.”
My fantasy vacation destination is: To go back to safari in South Africa with our boys. Ashley and I went there on our honeymoon.
The best advice I’ve ever received: Be kind.
Something I think everyone should try at least once: Golf.
The most delicious meal I’ve ever had: Our rehearsal dinner in the middle of a vineyard with our families [at] Rams Gate Winery in Sonoma.
Three words to describe me: passionate, caring, loud.