Patient Empowerment Toolbox

Would you like to share your experience with Brain Disease?

We want to hear your stories as patients, caregivers, family, and friends to help us raise awareness for how brain disease is impacting your lives and celebrate with you in your inspiring achievements. Please take a look at stories that have already been generously shared with us below.

Instructions for Authors

In 400-600 words, please tell us:

  1. Your story: the nature of your or your loved one’s brain disease (paragraph 1)
  2. How it affects you personally (paragraph 2)
  3. What your hopes for treating this disease in the future are (paragraph 3)
  4. How you think Orion Bionetworks could help (paragraph 4)

Submit your story online – click here to send us a message

Note: Providers of articles selected for publication will be given a free admission to our Annual Conference June 12th in Cambridge, MA. All articles become the property of Orion Bionetworks once submitted and will be “reviewed” by our committee. Final selections for publication are at the sole discretion of Orion.

  • State of Mind – Epilepsy

    April 1, 2015

    Epilepsy: A mother and scientist advocates for new research and investment by Catherine Jacobson My son’s first seizure happened when he was 14 weeks old. Ben was in the Baby Bjorn on my chest, apparently a peacefully sleeping infant. His eyes opened and rolled back into his head. It only lasted a few seconds. The first time it happened, I

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  • State of Mind – Living with Depression

    March 2, 2015

    Living with Depression By Jackie Karner-Sawyer I was first diagnosed with depression when I was 33, right after the birth of my first child.  It was textbook postpartum depression, but there were other previous symptoms that were over looked this time around.  I found a therapist and began sessions and my primary care physician was able to prescribe an antidepressant

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  • STATE OF MIND: History can’t repeat itself

    February 11, 2015

    It began with a phone call. The guidance counselor from our local high school, calling to say my oldest daughter, Madison, was being transported to a local emergency room. As a parent of 4 children, having a child rushed to an emergency room is old hat, but this wasn’t an “I can handle it” typical situation. Madison was being sent to a psychiatric emergency room for immediate evaluation. To say I was stunned is a complete understatement.

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  • STATE OF MIND: Caring for The Unraveling Mind

    September 30, 2014

    A two-hour car ride feels like 2 days when you have the same conversations about the weather and traffic, over and over. I have long mourned the loss of my mother as a friend and confidant. At 88, she is remarkably still mobile, but has been suffering from dementia for the past 8-10 years.

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  • STATE OF MIND: A Personal View on Depression in the Wake of the Robin Williams Tragedy

    September 3, 2014

    The moment the email came in, emotion overwhelmed me. Glowing in front of my face as I sat back wide-eyed on the couch in the dark in a pair of tired gym shorts, there was a note saying I was one of a handful of people nominated by my company’s leaders for a national trade journal’s “Rising Stars” award. What luck! Completely taken aback, you can probably imagine all the feelings racing through my head… things like desperation, hopelessness, panic, anger, and shame. Wait, what?

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