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Did you know that 1 in 3 people will experience a brain injury in their lifetime? But despite this staggering number, most health and social care services are not designed to meet the recovery and rehabilitation needs of survivors. Recovering from a brain injury often includes significant emotional, physical, and financial challenges, yet individuals are frequently left to face complex recovery journeys alone.
Emilia Clarke, best known for her role as Daenerys Targaryen on HBO’s Game of Thrones, knows this struggle firsthand. While working on the series, she survived two life-threatening brain hemorrhages. Faced with the obvious lack of resources during her recovery, Emilia and her mother Jenny founded SameYou. Their ultimate goal: improve recovery for brain injury survivors by raising awareness and advocating for improvement in rehabilitation provision.
“The hardships, the problems, the difficult times that people have trying to get their lives back after a brain injury—and then that ripple effect with all of their friends and family—is just such an unknown state. Our mission is to raise awareness, to educate the world on the need for recovery.” - Jenny Clarke, SameYou Co-Founder
The organization launched with Emilia telling her story, and there was an immediate outpouring of support from people around the world. 28,000 people signed up to be part of the community and thousands of supporters made small one-time donations. But the most surprising part: the stories of survivors.
SameYou received thousands of letters from people telling their own stories, many stating that in sharing her story, Emilia had made them feel less alone and isolated; that she’d helped normalize brain injury. Almost overnight, Jenny and Emilia found a community of people who had a shared experience, but no outlet for it.
“Immediately we looked at that and said, ‘this is what we should be doing.’ The mission of the charity has not really been our mission, it’s been what people have asked us to try to do.” - Jenny Clarke, SameYou Co-Founder
SameYou’s small team of three dedicated people suddenly found themselves facing the monumental task of figuring out how to manage and engage their growing community while also nurturing real connections, supporting people who wanted to share their stories, and fundraising to advance their cause. They needed more than just a CRM; they needed a foundation that could equip their team to build a digital movement.
“How do you build a community of care? For us, NationBuilder has been absolutely instrumental.” - Jenny Clarke, SameYou Co-Founder
They started by setting up their digital infrastructure to support SameYou’s growing community, creating a dynamic website that could collect insightful data and offer easy-to-use, meaningful supporter journeys. They needed to make it possible for people to share personal experiences, as well as to sign petitions and participate in campaigns.
SameYou also wanted to ensure that every step of communication was both personalized and automated to maintain personal engagement without burning out or overextending their small team as the community scaled. By thoughtfully setting up tags and filters, SameYou could tailor communication to whether a person was a supporter, survivor, donor, or partner.
Giving people the space to connect and to share their stories is an important part of the organization’s work, not just because they believe sharing one’s own story helps the healing process for individuals, but also because learning about other people’s recovery journeys can help survivors feel less alone. In 2022, SameYou asked people to describe their lives after brain injury in their own words. The result: the moving animated video, The Untold Story of Brain Injury: Voices from Survivors
“We’ve been given permission to know what people go through. So we have a responsibility to share that because people generally haven’t got a voice, unless they’re in a community. So we just say, ‘can we help amplify that voice?’ And the way we can do that has got to be through NationBuilder.”
- Jenny Clarke, SameYou Co-Founder
But SameYou’s team feels a responsibility to make sure these stories aren’t just heard—that they’re also turned into action, advocacy, and funds that make a real difference for survivors. The team is always advocating, both online and in-person—including at Parliament! Most recently, in October 2024, they created an ActionButton (as part of the Right to Rehab campaign), so their supporters could simply and quickly urge their MPs to champion rehab and prioritize rehabilitation.
“I think ActionButton does make it really easy—it's having that technology that you don't even notice is technology.” - Jenny Clarke, SameYou Co-Founder
Nearly six years in, SameYou has achieved more than they could have imagined. They have connected and supported survivors of brain injury, turned over 10,000 individuals’ personal stories into a movement for change, and created extraordinary partnerships with organizations like University College London, The University of Edinburgh, The University of Central Lancashire and five East Lancashire hospitals, and Mount Sinai New York. They were granted membership to the World Health Organisation’s World Rehabilitation Alliance and, in February 2024, Emilia and Jenny were awarded MBEs for services to People with Brain Injuries.
From one person sharing their story, to a worldwide movement, SameYou is showing us all what’s possible when a community of care becomes a community of action. And they are just getting started.
You can support their work at SameYou.org.
