This Thursday evening, the I-35W bridge in Minneapolis will be lit in shades of purple and orange, in honor of the 20th anniversary of another mighty Minnesota bridge: CaringBridge, the Eagan-based global social networking site that helps people chart challenging health journeys for themselves or their loved ones.
The site, created in 1997 by founder Sona Mehring as a way to help her friends share news when their daughter Brighid was born prematurely, has since supported more than 675,000 individual sites with more than 2.1 billion visits.
While the nonprofit began as a way to communicate the stories and needs of people experiencing health challenges, it has grown almost organically into a key source of emotional support and strength for caregivers, said Liwanag Ojala, CaringBridge CEO.
“Today, 65 percent of our new sites are created by caregivers,” Ojala said. “Over the years, we’ve become a way for caregivers to control the chaos in the messaging and to communicate the practical issues of a loved one’s health-care journey, but we’ve also grown into an important place for them to find support from the outside world. Digital has the opportunity to play a role in minimizing isolation and supporting the caregiver on the journey, and we understand that more than anyone.”
This shift in audience is one of the many changes that CaringBridge is celebrating in “20 Years One You,” an anniversary campaign designed to emphasize the nonprofit’s growth and development over the last two decades.
Earlier this month, Mehring and Ojala were joined by JoAnn Hardegger, mother of Baby Brighid, when they donated parent gifts to the Neonatal Intensive Care Unit at Children’s Hospital in St. Paul in honor of the site’s anniversary. The organization is also collecting the stories of people whose lives have been affected by the website. And Gov. Mark Dayton proclaimed June 7 CaringBridge Day in the state of Minnesota. David McLain, a National Geographic photographer and documentary filmmaker, has been hired to document the campaign.
The specially lit bridge will be icing on the cake, falling on the day of Mehring’s retirement party.
“This is a big week for us,” Ojala said. “We have a lot of celebrating to do.”
Digital with a heart
Hired in 2014 as COO with the goal of eventually stepping into Mehring’s shoes, Ojala came to CaringBridge from a career in online grocery and retail at Meijer, SimonDelivers, and CobornsDelivers.
“It was an intentional succession plan,” she explained. “Sona and the board worked very closely together in my hiring. The plan was that I would gradually transition to the CEO role.”
Before coming to CaringBridge, Ojala had never worked at a nonprofit. She said that while she was excited by the challenge of leading a pioneering social media company, she was primarily drawn to the job by the organization’s emphasis on making a positive difference in the lives of its users.
“At the beginning, this job was an interesting operations and digital challenge,” she explained, “but quickly, as I started reading more public CaringBridge sites, I began to understand the value of the catharsis that comes from writing, the value of having people wanting to hear your stories and the impact of active listening on a community, of people stepping forward to help a person in need. This made the job feel significant.”
It didn’t take long for Ojala to realize that at CaringBridge, even small coding changes had the power to help others. This was a great realization.
“Every single time you make an improvement at CaringBridge it makes a positive practical impact on people’s lives,” Ojala said. After years working in traditional online industry, this ability to foster lasting positive impact was particularly appealing.
“We need to use digital technology to produce more good in the world,” she said. “There is way too much negativity in society these days.”
Expanding CaringBridge’s reach
Looking forward to the next two decades, Ojala sees CaringBridge building on existing features — and expanding in new directions to meet the needs of users. In their resources section, the site has enhanced some of those features already, and has plans to further expand those offerings in the future, through outside partnerships and enhanced interactive features.
“We want to keep thinking about new ways we can support caregivers and visitors,” Ojala said. “How can we serve them by suggesting things that they might do to help others in their health journey? How do we help visitors think about what to say? These are examples of things that we have in our program roadmap.”
One enhancement will likely be features that help users add more interactive elements to their posts, Ojala said.
“We’re enhancing our multimedia capabilities, making it possible for users to tell their story and share a message with voice and video and music. These are ways that people communicate now.”
The site is well known in traditional hospitals, Ojala said. “We’ve been incorporated in a lot of hospital networks already. The No. 1 way people hear about us is they are referred to us by somebody who’s created a site before or they hear about us from a health professional in a moment of need.”
But CaringBridge isn’t just for people with physical ailments. Ojala would like to build stronger connections with psychiatric hospitals, so that more patients and their families could see how the site could help them. People undergoing treatment for mental illness also need support, and Ojala believes that the site could help break down walls of silence built around family members and communities.
“I do think that there is an opportunity for people to use a social network around mental illness,” Ojala said. “There could be a way to bring in the community and encourage participation and social support. This could reduce the stigma around mental illness that still exists after all these years.”
While CaringBridge has no hard data about the number of users who use the site to support someone struggling with mental illness, they are working with a group of University of Minnesota researchers to build a greater understanding of their user population. While Ojala knows that the site enhances many users’ mental health through indirect benefits, she also suspects that there is a significant number who may be already using the site to gain support during a mental health crisis.
“We started a year ago working with these researchers,” she said. “They are working hard to better understand our data set. How much of our users are acute illness? How much are chronic illness? How much are mental illness? We haven’t yet gotten to the answers. Research is a long and winding road.”
CaringBridge may be older than Facebook or Google, but it has made a point to stay true to its founding principles. The “small-but-mighty” staff of 40 is still based in Eagan, focused on the basic concept that very first site was built around: helping people use the internet to get the support they need when they need it the most.
“It’s a pretty basic idea and it’s worked all these years,” Ojala said. “We want to activate communities in support for healing.”