In 2018, we lost our founder, Jason Hairston to Chronic Traumatic Encephalopathy (CTE) that stemmed from his college and professional football career. During Founder’s Week, Jason’s wife, Kirstyn Hairston, reflects and shares her thoughts on CTE awareness and our support of the Concussion Legacy Foundation.

WHAT DO YOU HOPE TO ACCOMPLISH BY SUPPORTING THE CONCUSSION LEGACY FOUNDATION?

We want to bring awareness to Chronic Traumatic Encephalopathy (CTE), accelerate research towards a cure, and enable Concussion Legacy Foundation (CLF) to support more families fighting this terrible degenerative brain disease.

Jason was among the first 500 people ever diagnosed with CTE, so there is still so much work to be done. Doctors still don’t know how to definitively diagnose CTE in living people, and right now there is no treatment that will stop, slow, or cure the disease.

When Jason started showing symptoms, there were no support groups or help lines I could turn to. One of the reasons we are supporting the Concussion Legacy Foundation is because they are committed to helping patients and families.

They launched a HelpLine in 2019 where they provide personalized help and support to those struggling. Families living with CTE desperately need this help. If you are reading this and need help or advice, please reach out to the HelpLine.

WHO IS AT RISK FOR CTE?

Individuals diagnosed with CTE usually have a long history of repetitive head impacts. Those who have just suffered a concussion or two, or even a traumatic brain injury from a car accident or fall but do not have that history of hundreds or thousands of hits, do not appear at risk of developing CTE.

While we often think of CTE as something that only affects athletes, its reach is far bigger. Victims of domestic violence have been diagnosed with CTE. Military Veterans are the second largest group to be diagnosed with CTE after athletes. It is important to recognize they can develop CTE from dangers of training and defending our country.

The Concussion Legacy Foundation recently launched Project Enlist, a program to accelerate research on TBI, CTE and PTSD in the military community so we can better understand how to diagnose and treat the brain injuries so many service members experience.

BECAUSE THERE IS NO CURE YET FOR CTE, CAN YOU COMMENT ON THE IMPORTANCE OF PREVENTION?

It’s very important for athletes and parents of youth athletes to understand that CTE is preventable. CTE is caused by repeated blows to the head. Most people who have been diagnosed with CTE took those blows to the head voluntarily while playing football, soccer, rugby, ice hockey, or boxing.

IS THERE ANYTHING SPECIFIC TO YOUR HUSBAND JASON HAVING CTE THAT YOU WOULD LIKE TO SHARE?

Jason was a fighter. He tried everything to defeat CTE, but in the end it overwhelmed the toughest man I’ve ever known. That speaks to how difficult this disease is, not only on those with CTE, but also on their families.

He was trying to build a business and raise a family while being tormented by the symptoms of CTE that often come on in midlife: chronic headaches, mood swings, impulsivity, and forgetfulness. I hope that by working alongside the Concussion Legacy Foundation, I can help more families find support in their fight against CTE.

FOR PATIENTS AND FAMILIES FIGHTING CTE, ARE THERE REASONS TO BE HOPEFUL?

Absolutely. Because of organizations like the Concussion Legacy Foundation and families like ours who have donated a loved one’s brain for research, we now know more about CTE than we ever did before.

The Diagnose CTE study is getting us closer to understanding how to diagnose CTE while people are alive. The CTE Conference hosted by Boston University and the VA is training doctors on how to treat patients with CTE. CLF now offers resources for patients, caregivers and families and even provides mentors through their HelpLine.

Families like ours are sharing our experience to erase the stigma of silently suffering with CTE. Together, we are helping patients and families learn how to live with CTE.