Empowering patients, changing healthcare

by Yasemin Ulusoy | ashoka | Ashoka UK
Tuesday, 12 July 2016 16:52 GMT

* Any views expressed in this opinion piece are those of the author and not of Thomson Reuters Foundation.

Contrary to popular belief, strokes do not only affect the elderly, they can affect anyone from babies to children to teens. Twenty million people suffer from strokes every year, and two million of them are 18 and younger. There are even cases of strokes affecting fetuses before birth. When Francesca Fedeli and Roberto D’Angelo’s son Mario was just 10 days old, he was diagnosed with a perinatal stroke on the right side of his brain, which left him unable to move the left side of his body.

Perinatal strokes affect blood vessels in the veins. They lead to injury in the brain during the fetal or newborn period. The diagnosis took Francesca and Roberto on a journey, which started with their search for treatment methods that went beyond simply ‘learning to live with a disability’. Their search led them to Professor Giacomo Rizzolatti, a world-renowned neuroscientist who discovered mirror neurons in 1995.

Rizzolatti and his group discovered that mirror neurons are activated in the brain, not only when performing an action, but also when watching someone carry out the action. This simple exercise of repeating specific muscle movements can treat strokes, orthopedic disorders, Parkinson’s disease, and is proven to work for both children and adults. Mario is now four years old and through mirror neuron rehabilitation has improved motion significantly.

Following their personal experience with the rehabilitation process, Francesca and Roberto adopted a ‘fight and smile’ strategy, and set up FightTheStroke in Italy in 2014. Working with health professionals, FightTheStroke aims to support young stroke survivors through early detection and rehabilitation. They study the impact of mirror neurons in the rehabilitation of children affected by motor and cognitive impairments, and also the crucial role of the family in the rehabilitation process.

Beyond creating a platform on social media for affected families to share experiences, Francesca and Roberto are investigating the use of technology and open medicine to transform healthcare. Their empowerment based approach focusses upon disseminating knowledge from the medical field enabling the wide population to measure and maintain their health.

Together as a family, they are promoting awareness of strokes at events like TED Global 2013. They have organised the first ‘Call for Brain’ event with TEDMED live streaming and Med Hackathon in Italy, which aimed to bring together leading experts on Medicine and Innovation. Francesca also wrote Fight and Smile, with the aim of spreading their message further, and she’s currently exploring other opportunities for book translation in languages other than Italian. All profits from sales are channeled back into FightTheStroke.

FightTheStroke is now in the process of fundraising to develop patient-driven technology for treating strokes. The project facilitates mirror neuron treatment for children through an interactive video platform, where children watch muscle-strengthening activities on screen and repeat them. The technology will allow families to bring treatment into their homes, connecting children with similar conditions to complete activities together through Skype plug-in. The video platform has a strong potential for the treatment of health conditions, in a way that empowers patient as it can be adapted to various conditions involving motor neuron outcomes, and can be used for skill development in children.  

 


Francesca and Roberto are examples of the system that they are working to create. They look at opportunities and strengths rather than obstacles, harnessing sharing and support within communities, and treating the individual as a person and not as a collection of organs to maintain and repair. As a member of the Board of Directors of the International Alliance for Pediatric Stroke (IAPS), FightTheStroke is advocating for Stroke patients internationally and working to empower stroke survivors.