Roberto D’Angelo and his wife, Francesca Fedeli, welcomed the birth of their son, Mario, in 2011 with all the joy and anticipation of any new parents. Ten days later, they learned the infant had suffered a stroke.
After grappling with the initial shock and feelings of failure, the couple saw that their son’s situation was, in D’Angelo’s words, “not a problem . . . [but] an opportunity for change.” That same year they cofounded FightTheStroke.org, a nonprofit group that advocates for pediatric stroke survivors. The group brings together the worlds of technology, health care and social enterprise development to spur advances in research and therapy.
One important tool in those efforts: Kinect. A rigorous physical component is, of course, crucial to recovery for stroke victims. Microsoft technology answered the call last year when FightTheStroke.org became an early adopter of Kinect v2, which served as the base for the next step in children’s rehabilitation therapy: virtually connecting two kids facing similar challenges so that they can watch and learn from each other. This exercise employs the “mirror neurons” concept, in which patients model the physical movements of another and in doing so strengthen their own connections.
It can be challenging to find and match up children who are in the same area to help each other, and D’Angelo, who works for Microsoft Office 365 in Italy, called Kinect “a tremendous pillar” in enabling those remote connections, effectively placing patients in the same room together. He sees huge potential in the technology, including the opportunity to embed an approach specifically developed with rehabilitation in mind.
In 2014, Fedeli received an Eisenhower Fellowship, a distinction awarded to innovative leaders working toward positive change. The experience “was really powerful for us,” she says. The couple visited 10 US cities and met with neuroscientists, members of the National Institutes of Health and social entrepreneurs to spread their message.
Stroke is a problem that is “the same all over the world,” she says, and through technology, people all over the world can get access to the healing opportunities that have helped her young son.
Along the road of Mario’s rehabilitation, the couple encountered approaches that were “not so innovative,” D’Angelo says. Therapists often employed the same techniques that have been in use for decades.
He and Fedeli believe that the key to healing is engagement through tools such as technology, music, and games, and that stroke patients can benefit immensely from “pure learning” within the family environment, not just the hospital context.
Technology is also a tool for caregivers and therapists. Office 365 and Azure Cloud Services have opened up the world of data sharing and communication. Caregivers can collect a tremendous amount of new information, which could potentially be gathered into a worldwide system.
FightTheStroke.org is running a pilot program with Columbia University in New York, in which the university assists by conducting rehabilitation remotely with a patient at home. With complicating factors such as cost and limited options for families living far from facilities, the potential impact of a virtual approach to therapy is significant.
Fedeli noted that caregivers and family members have an important role in their kids’ recovery, keeping them engaged and motivated – a perspective embraced by many of the health-care professionals she and D’Angelo have met with.
To strengthen the relationship between doctors and caregivers, FightTheStroke.org launched the Call for Brain live event in Milan in September to gather both groups and initiate a conversation. They also organized the first Italian hackathon for health care.
Fedeli sees these events as important opportunities to highlight the “open medicine” concept, which promotes access to and exchange of health-care knowledge. Traditionally, doctors were the authorities who held all the information.
“We need to rebalance that relationship” between medical professionals and the patient and caregiving communities and open a dialogue, she says. One thing on which physicians and families agree is that both groups “really expect the technology to step in” to make greater advances in treatment.
How is Mario doing today? D’Angelo laughs, and his voice lights up. He is clearly a proud dad. “We’re still at the beginning,” he says, but “he’s improving– because he’s engaged.”
The youngster is already a veteran traveler, having accompanied his parents on the Eisenhower Fellowship tour of the United States. “If you asked him why he was here” with them, D’Angelo says, “he would say, ‘Because I was trying to help other children like me.'”
Added Fedeli, “Sharing your story is the first step for everyone.”
Microsoft News Center Staff