Crowdsourcing a Cure
Stroke can be life-altering — a disease that can devastate your ability to communicate and control your body. While many of the risk factors of stroke are modifiable, scientists are beginning to work with individuals, like you, to look closer at other factors, such as genetics, diet, daily routines, and the environment.
In the last century, research has reached major milestones, and these advances are expected to continue through the use of precision medicine. And the best part: You can be part of that.
A new approach to medical care, precision medicine has particularly changed the way we think about cardiovascular health including which preventions and treatments work best for each individual. Precision medicine is focused on predicting and preventing disease — not just treating disease. The goal is to create better-targeted, safer and more effective treatments that maintain and improve health.
The American Heart Association/American Stroke Association’s (AHA/ASA) Institute for Precision Cardiovascular Medicine is working with individuals and researchers to elevate the power of the crowd through My Research Legacy™.
Perhaps you have heard of crowdsourcing? It’s the internet-enabled practice of enlisting large numbers of people to provide information, talent, funding or task completion for a project. Through My Research Legacy, you can share your data with world-class researchers in order to drive next-generation heart and stroke research. Your little data can be part of the big data — the prime resource of precision medicine.
The premise is simple. Healthy people and patients with cardiovascular diseases and stroke, 21-years-old or older, consent to provide new data for researchers about their lifestyle, health and genetic data. New technology makes data collection and data transfer much easier. As this data flows into the database, your personal identifying information is removed and replaced with a numeric code. Researchers analyze this information to accelerate scientific discoveries, find new treatments, and develop new ways to prevent disease.
A quarter-million participants — My Research Legacy’s aspirational goal — will keep scientists and their big-data algorithms busy for years. The pilot study is looking for individuals between the ages of 21 and 50, of any race, ethnicity or gender, who have been diagnosed with a heart attack, stroke, atrial fibrillation, aortic dissection or systolic heart failure/cardiomyopathy. The first 2,000 participants who are eligible and consent will receive a Fitbit Charge II to submit data daily.
To be clear, participation in this study is unlikely to directly or immediately improve any participant’s own health. This is about the future — about one day providing better treatment and prevention for future generations, as well as contributing to improvements that may be seen in your lifetime.
Join the movement of crowdsourcing the end of cardiovascular diseases and stroke. Learn more about participating in My Research Legacy today.
Survivor and advocate Brady Johnson
Brady Johnson of Belvedere, Illinois, had a stroke on April Fools’ Day in 2004, when he was 31 years old. Brady’s stroke was the result of an arteriovenous malformation, a tangle of veins and arteries that he did not know he had. After six months of headaches, a particularly bad one sent him to the hospital. Imaging revealed the tangled mass of veins and arteries in his brain. Arteriovenous malformations are dangerous because arterial blood is flowing through veins that are weaker than arteries and can leak or break at any time, often without warning. Brady was rushed into surgery, where he had a stroke during the operation. The stroke took his speech and paralyzed his right side.
After a month in the hospital, he spent three months in an inpatient rehabilitation facility and regained his speech as well as some mobility, though his right side is still limited. After partial recovery he took a job with the Social Security Administration, since he could not return to his previous career in the military.
After his stroke, he could no longer run half marathons, and that caused Brady to get deeply depressed. “My eating got out of control and I gained 40 pounds in six months,” he said. Heather, an All-American basketball player who was coaching college basketball and was Brady’s fiancée at the time, noticed what was happening. They began to work out together, Brady on a stationary bike and Heather on a treadmill. They were rigorous in their commitment, and together they lost a combined total of 80 pounds. “I was back to my normal weight by July 2005, when we finally got married,” he said. They now have two children — Brayden, 11, and Benjamin, 6.
“Since my stroke, my faith, which was strong prior, has become more solid and eye opening,” he said. “Doctors told me I might stutter, or wouldn’t be able to see clearly, or walk, or drive or even have children. I can say that I surprised the doctors with how much I have accomplished.”
Brady was determined to use his stroke for good: He wrote a book about his experience, A Life of Commas: A Soldier’s Story, and speaks regularly about stroke and stroke prevention. “I tell my audiences that just because you have had a stroke, life doesn’t have to end,” he said.
One way Brady has contributed is by enrolling in My Research Legacy. “I want to help others of all generations,” he said. “Signing up is simple, a questionnaire about personal and health history, and conversations with the researchers overseeing the project.”
With Brady’s help and the help of other stroke survivors, there’s no telling what we’ll learn and how much we’ll advance treatment around conditions like stroke.
Brady Johnson shares his story.