For more information on Concussion Alliance click here.
Discovering the Silent Epidemic
My son, Conor, suffered his fourth concussion during the very first week of college—and it changed our lives forever. After three sports-related concussions in high school, this one brought persisting symptoms that forced them to take medical leave. Doctor after doctor couldn’t help. For two years, Conor couldn’t return to college full-time while we desperately searched for treatments, diving into research papers and contacting researchers directly.
At the time, there was almost nothing online for concussion patients with persisting symptoms. Eventually, in 2018, we founded Concussion Alliance, a nonprofit organization dedicated to concussion education and advocacy, to share what we had learned so that others would not struggle as we had.
We’ve learned about the extent of this silent epidemic. Globally, there are 1.77 concussions per second. Traumatic brain injuries are eight times more common than breast cancer, AIDS, multiple sclerosis, and spinal cord injury combined. In any given year, 1 in 10 youth and 1 in 8 adults sustain concussions, with 15–50% developing persisting symptoms.
From Desperate Parents to a National Resource
Our website, ConcussionAlliance.org, is now the most comprehensive website about concussions on the web. We have 56 resource pages about concussion symptoms, adjacent health problems such as mental health, concussion treatments, how to find providers, self-care, and how concussion affects different communities, such as women and girls, veterans, workers, children, adolescents, elders, and more.
Twenty thousand people make use of the website every month, and we regularly receive feedback on how helpful and sometimes life-changing our resources are.
We produce a biweekly Concussion Update Newsletter that goes out to 3,500 subscribers, providing, easy-to-read synopses of new concussion research, guidelines, and concussion-related news stories to keep our growing community informed.
We support research by participating in community advisory boards for research studies and by promoting clinical trials in the Opportunities section of our newsletter. We run a summer internship for undergraduate students who become advocates for better concussion prevention, management, and care in their communities.
We’ve accomplished all this on a shoestring budget with just the two co-founders, Conor and I, as staff members; we are currently fundraising to hire a third person. This has become my career, and I’m grateful every day for the opportunity to help patients, family members, and providers better manage this challenging injury.
What Concussion Alliance Taught Us About Leadership and Resilience
Start with what you know. I knew website building from my art career, so I created a simple site sharing what we had learned from Conor’s concussions.
Healthcare professionals eagerly joined our efforts because they recognized the desperate need for better patient education. What began as desperate parents searching for answers became a comprehensive resource addressing a public health crisis.
Conor still has symptoms after nine years, but they have significantly improved. Our personal journey continues alongside a larger mission—proving that sometimes the most powerful leadership emerges from simple determination to ensure others don’t suffer as you have.
