The My Alzheimers Story Project
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The MyAlzheimers Story Project is building the world’s largest collection of Alzheimer’s stories on video. As part of #brainawarenessmonth last June, the project created the #MyAlzRoadtrip initiative and drove from Los Angeles to Philadelphia, capturing Alzheimer’s stories. We partnered with the Penn Memory Center and were sponsored by AARP. Our goal for this groundbreaking initiative was to show America the “Modern Alzheimer’s Experience on Video”and help create a feedback loop, between the Alzheimer’s community and our research partners at the Penn Memory Center.
In just over two weeks and seven American cities, we were overwhelmed by the support, inspiration, and hope that each and every person instilled in all of us. Every single person with whom we met had a very unique story and we're honored they shared their stories with us. There's definitely still a stigma in this country, regardless of where you go, around the idea of Alzheimer's. And maybe part of that is embedded in the fact that we have a general stigma around aging. We know we need to look at aging today, in a very different way than before. We're certainly living longer, but we have to take a deeper look at this issue. Healthy, active lifestyles are the key to better, longer, and more fulfilling lives. But in order to have complete quality of life as we age, we have to tackle more complicated issues, like cognitive impairment. We need to shatter the stigma by sharing stories about mental health.
So part of our exploration with this road trip across America, was to discover more about the relationship between mental health and diseases like Alzheimer's. It didn't matter where we went, people were constantly telling us about the problems they faced, with respect to isolation and loneliness. These are issues that affect every single person on the planet. Everyone is looking for meaningful connection and sharing stories opens up our dialogue about difficult topics like mental health, aging, and Alzheimer’s, and bonds our connections with each other.
Most of the people that we met were fighting battles on multiple fronts. But one thing's for certain: people are incredibly resilient. And there is a lot more similarity between all these different types of people, regardless of where they are, than in the differences. If we were to focus on that just a little bit more, the Alzheimer’s and aging conversation might open up, it might become easier. We might completely and finally shatter the stigma. Another part of the the MyAlzRoadtrip and MyAlzheimers Story Project mission is to build up this library of human wisdom that highlights the ways that we are all fighting Alzheimer’s and aging, in very similar ways. And most importantly, help show people how we can have a better conversation; a more meaningful conversation, not only with each other but with policy makers, clinicians, and researchers.
Over the next several months, we’ll be editing these stories and sharing the final videos, in a variety of ways. We interviewed 70+ people on the #MyAlzroadtrip, which we’ll turn into over 1,000 pieces of digital content. All of this finished content will get distributed on MyAlzheimers.net, as well as our social media channels. This growing library of human wisdom will become a resource for people interested in brain health, aging, and Alzheimer’s - as told from people of every age and background. Additionally, we’ll also be sharing these stories with our scientific partners at the Penn Memory Center, headed up by Dr Jason Karlawish and Dr. Jason Moore. The stories will serve as the “missing link” of information, as researchers look for new forms of treatment and better diagnosis technologies.
This project for us has been a labor of love until now, but it's growing. We don't know where or how far this journey will take us. But we do know this: the aging crisis, dementia, Alzheimer's - they’re not going away anytime soon. Brain health impacts us all. And the search for better care and a cure needs to be a collective effort because the problems are so complex and nuanced. We simply cannot sit back and think that policy or science alone are going to solve this crisis. So, the more dialogue that we're having, the more stories that we share - this creates a feedback loop between the Alzheimer’s community and the scientific research that's happening all over the world.
We were overwhelmed by the MyAlzRoadtrip experience and by every single person with whom we connected, on our journey across the United States. And we know that we need to keep sharing; keep talking about our unique experiences. We do this, and we can help secure more research funding. We can change policy, not only at the local level, but at the national level. And hopefully, our collective effort will also help researchers take a closer look; a more human look, at the way that we're all dealing with the aging crisis and cognitive impairment issues, in America. So please, continue the fight. Keep sharing your stories. And if you can, help support the MyAlzheimers Story Project by going to MyAlzheimers.net.
