Alyssa’s Story


Alyssa’s Story

Alyssa had the lightbulb moment to create Brave Minds Project as she was preparing to celebrate a very big milestone: the 10 year anniversary of her brainstem surgery.

She was just 15-years-old when doctors found a cavernoma lodged deep in her brainstem, often referred to as a ‘cavernous malformation’. To put it in layman’s terms, Alyssa had a cluster of abnormal blood vessels, that resembled raspberries, located deep in her brainstem. Each time these blood vessels bled, it would put pressure on the nerves in the surrounding area. For Alyssa, this affected the 6th & 7th cranial nerves on the right side of her face, primarily affecting her right eye and smile.

When she was 18, her cavernoma bled again, causing even more damage. It was then that her doctors advised her that it was time to remove what they could of this cavernoma. As one doctor put it, she was a ‘ticking time bomb’, and not removing it could potentially cause even more damage. Although the risks were tremendously high, Alyssa underwent brain surgery just a few days after her high school graduation.

Alyssa Carfi 2.jpg

Fast forward 10 years: Alyssa is taking what this crazy journey has taught her and creating what she hopes will be a community and an outlet for those who are in the same position Alyssa and her family once were.

For people who came into Alyssa’s life while she was in college or post-college, they know her as she is now — as having always looked this way, as someone who frequently goes to medical appointments, and as someone who has had more surgeries than most people can count on both hands. Following her surgery and recovery, Alyssa went on to study Advertising, Marketing & Communications at the Fashion Institute of Technology.  Now, a decade on since her surgery, she is now able to live the life she’s always dreamed of — working as a PR professional at a world-renowned advertising and PR company in the heart of NYC, having an amazingly supportive group of close friends, and traveling the world every chance she can get. Sadly, this isn’t the case for many people who are living with brain conditions.

Alyssa’s mission is to create a community that fosters hope and provides patients with the assurance they need to know that they too can live life to the fullest despite what they may currently be facing.

Alyssa and Brave Minds are committed to helping patients and their families navigate through the uncertainties they must endure upon receiving their diagnosis. To reach out to Alyssa with questions, or to learn more or support the Brave Minds Project, feel free to email to her at