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.

Brady Johnson

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.

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Stroke Rehabilitation Two-Part Series

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-art series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try
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Stroke & Parts of the Brain

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!