One day six years ago, journalist Mike Porath, the former editor-in-chief of AOL news, and his wife got two doses of difficult news: the 20-week-old fetus Sarah was carrying was missing a kidney —and their two-year-old daughter Annabel was officially diagnosed with Dup15q syndrome, a chromosomal disorder that can result in growth and developmental abnormalities.
“We felt lost,” Porath explains. “It was a punch to the gut. It took some time before we figured out what exactly we were doing and to come to terms that we were on a different path than we first imagined.”
He wrote, “Lying in bed that night we were shaken and lost. This was not the life or family we had planned. I remember feeling small and hollow, a powerless husband and father. Whether it was a futile attempt to comfort my wife or a way for me to make sense of it all, I told her that we were going to do something good with this. How, she asked. I had no idea. We were in tears.”
Slowly, a path emerged: Their son Isaac, born without a kidney, appeared to have no larger health issues. Annabel finally had a diagnosis that put a name to her mysterious symptoms, and a small but supportive digital community of Dup15q syndrome families showed them how to cope. A third child, Henry, came along. And then in early 2014, Porath was inspired to launch The Mighty, a digital platform for all people with disease and disabilities, and their families.
Less than 18 months old, The Mighty now has an editorial team of 10 and nearly a thousand community contributors, and provides news and analysis of disability-related issues in popular culture, scientific research and social networks. It’s Huffington Post-meets-disability-and-disease-support-groups.
It’s where you can find columns like “Why This Dad Is Turning His Son With Down Syndrome Into a Social Media Star” and “Why I’m ‘Out’ as a Person With Mental Illness.”
It’s a place on the Internet where article comments are overwhelmingly positive. (Really!),
It’s where you realize that having a disability or a disease, which can often feel isolating, is something that in fact bonds millions of Americans and their families together.
And it’s where millions of visitors a month now flock, a testimony to the power of stories, and to the need for those with differences to feel supported.
“We wanted to build a media company that actually helps people,” Porath explains.
The notion of building a media company that relies on thousands of unpaid contributors is one that raises some eyebrows. But Porath explains that their vision is to provide non-monetary benefit to their writers, in the form of a platform to raise awareness of their particular disability or disease, giving them a sense of empowerment, and a connection to a broader community.”We think we can do far more good as a media company than we could as a nonprofit,” he says.
The Mighty has not yet monetized the site but hopes to further link for-profit to non-profit by luring brands like pharmaceutical companies to advertise to communities on The Mighty and then donating a portion of revenue back to the related causes. (So, for example, a portion of revenue from from a diabetes drug ad sale that accompanied content on the disease could be donated to the American Diabetes Association.)
Exactly how a monetized site might change the community Porath has built is a challenge they’ll be wresting with in the years to come, but for now, The Mighty’s cheerleaders say the site is already helping people in tangible ways.
Jean Abbott, a woman who had been misdiagnosed with cerebral palsy for most of her life, wrote for The Mighty about her experience finding a new doctor—and a near-cure—for her disease.
Previously rendered largely unable to walk with assistance, Abbott’s life was transformed by a pill that a neurologist prescribed her for dopa-responsive dystonia (DRD), “a disorder characterized by involuntary muscle contractions and tremors.”
After she wrote about the experience for The Mighty, she was not only invited on the Today Show and featured in numerous media outlets, but in the months since, she has also heard from 15 other people who realized through her story that they too had been misdiagnosed with cerebral palsy, and that a new medication was changing their lives, too.
“I’ve been given a wonderful gift,” she says.
Daniel DeFabio, who found the motivation to finish a documentary about his son’s genetic disorder, Menkes Disease, after being inspired by the impact of The Mighty’s stories, says “these virtual relationships are sometimes all you have.”
Although DeFabio is connected to other Menkes families through a Facebook group, he says that the bigger platform The Mighty provides connects him in a new way to a much larger community, united by disease or disability.
“One of the worst aspects of dealing with a rare disease is that so few people understand what you are going through. To find a community where most or all people are facing similar things is really a gift.”
To Porath, the experiences the Abbott and DeFabio had after connecting to a greater community through his platform aren’t unusual, they’re simply showcasing the too-often-hidden goodness of humanity.
“There are always going to be bullies out there. They’re typically the loud and obnoxious ones. People often forget the silent majority is actually really encouraging. They want to help each other. We’ve provided a platform for that silent majority to not be silent.”
Want more inspiring news and ideas to improve your life? Sign up for the Saturday Inspired Life newsletter.
If you liked this story on Inspired Life, you may also enjoy: