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February ’24: The Third International CTE Awareness Month

February may be the shortest month of the year, but it’s certainly no less important—this month is International Chronic Traumatic Encephalopathy (CTE) Awareness Month.

It’s CTE awareness month. Is your kid’s school sports program up to date on the latest in concussion prevention?

First introduced two years ago by the Concussion Legacy Foundation (CLF), the aim of CTE awareness month is to foster dialogue and education on CTE.

What is CTE?

CTE is a neurodegenerative disease linked with repeated traumatic brain injuries (TBI). 1 This is generally not an issue if you’ve simply bumped your head getting in and out of your car a few times. The type of repeated TBIs linked to CTE are the ones commonly seen in boxers, American footballers, ice hockey players, rugby players, soccer players, and military veterans. 2 

How common is CTE?

Doctors consider CTE a rare disease, but its official occurrence rate is unknown. Some community brain bank studies suggest around one percent of the general population has CTE. 3, 4 The challenge in determining rates is likely due to a few reasons3:

  • Doctors can only diagnose CTE at autopsy (i.e., it cannot be conclusively diagnosed in living people). 
  • For many years, the medical and research community had not agreed on an official diagnostic criteria.
  • CTE symptoms show up differently between individuals, making it hard to identify.

CTE symptoms have been reported in individuals as young as 17 years, although they tend to worsen with age. Increasing CTE awareness in family doctors and the general public not only helps people to take preventative steps, but will also help with reporting.

CTE symptoms

CTE symptoms are varied but affect three domains: cognition, mood, and behaviour. 

  • Cognitive symptoms include short-term memory loss, problems with balance and speech, even dementia.2,5
  • Mood changes include anxiety, depression, hopelessness, and paranoid delusions.2
  • Behavioural symptoms include violence, problems with impulse control, and a short fuse.2,5

Dr. Ann McKee, a pioneer in CTE research, categorizes it in 4 stages:6

  • Stage I; no major symptoms, an individual may complain of some short-term memory loss and depressive symptoms.
  • Stage II; the start of greater mood and behavioural symptoms such as outbursts.
  • Stage III; increased cognitive deficits and memory loss.
  • Stage IV; advanced language deficits, paranoia, and dementia.

There are many unknowns around CTE

Researchers don’t have a definitive answer for what causes CTE. 2 It is generally accepted that TBI can trigger CTE. We don’t, however, understand the explicit connection between the TBI and underlying brain changes that lead to CTE. 2 In fact, not everyone who experiences TBIs will develop CTE. 1 

Brains of people who died with CTE display a unique buildup of an abnormal version of the brain protein, tau, around blood vessels. Over time, as tau accumulates, it damages brain tissue.5, 6

However, we don’t yet have sufficient information about how the disease manifests and progresses to enable development of effective therapies. Doctors can help people to manage their symptoms, but there is no cure for CTE. 6

The Concussion Legacy Foundation7

Founded in 2007, the CLF is a non-profit organization based in the United States. They aim to “promote smarter sports and safer athletes through education and innovation” and “end CTE through prevention and research.”

As is often the case, the CLF is a product of the founders’ personal connection and investment around concussion safety. Former pro-wrestler, Chris Nowinski, Ph.D., and Robert Cantu, M.D. started the NGO while Nowinski was seeking treatment for Post-Concussion Syndrome.

As they discussed the culture around sports and head injury, they recognized the significance of CTE and the need to develop preventative measures.

The Journey to CTE

Nowinski believed that CTE could be more widespread than doctors thought. As a result, he  pushed to create the first CTE-focused brain bank to help further research into this condition.

Today, CLF supports athletes and veterans through a variety of education, advocacy, and research programs, including:

  • The CLF Media Project which creates university curricula on concussion education for sports media professionals.8
  • Flag Football Under 14 and Safer Soccer which are education programs to highlight the long-term effects of repetitive brain trauma from tackle football.9,10
  • Project Enlist which is a research program specifically for those in the active military and veteran communities.11

Importantly, they also run the CLF Helpline, offering support to anybody struggling with brain injury or in supporting a loved one with a brain injury. 12

Conclusion

Research suggests that CTE is not as uncommon as we once believed. Associated with popular sports and a large veteran/military community, it has a significant role to play in public health conversations.

Despite the absence of a cure, there is still plenty of scope for preventative policies guided by increased research and visibility on CTE.

References

1. Hugon J, Hourregue C, Cognat E, et al. Chronic traumatic encephalopathy. Neurochirurgie. 2021;67(3):290-294. doi:10.1016/j.neuchi.2021.02.003

2. Mavroudis I, Balmus IM, Ciobica A, et al. A Review of the Most Recent Clinical and Neuropathological Criteria for Chronic Traumatic Encephalopathy. Healthcare. 2023;11(12):1689. doi:10.3390/healthcare11121689

3. Smith DH, Johnson VE, Trojanowski JQ, Stewart W. Chronic traumatic encephalopathy — confusion and controversies. Nat Rev Neurol. 2019;15(3):179-183. doi:10.1038/s41582-018-0114-8

4. Musa A. Largest study of brains of athletes younger than 30 finds early signs of CTE even in amateur players. CNN. Published August 28, 2023. Accessed January 27, 2024. https://www.cnn.com/2023/08/28/health/cte-younger-athletes/index.html

5. What is CTE? | Concussion Legacy Foundation. Accessed January 25, 2024. https://concussionfoundation.org/CTE-resources/what-is-CTE

6. Fesharaki-Zadeh A. Chronic Traumatic Encephalopathy: A Brief Overview. Front Neurol. 2019;10(713). doi: 10.3389/fneur.2019.00713

7. Mission & History | Concussion Legacy Foundation. Accessed January 27, 2024. https://concussionfoundation.org/about/mission-history

8. Media Project | Concussion Legacy Foundation. Accessed January 27, 2024. https://concussionfoundation.org/programs/media-project

9. Flag Football Under 14 | Concussion Legacy Foundation. Accessed January 27, 2024. https://concussionfoundation.org/programs/flag-football

10. Safer Soccer | Concussion Legacy Foundation. Accessed January 27, 2024. https://concussionfoundation.org/programs/safer-soccer

11. Project Enlist | Concussion Legacy Foundation. Accessed January 27, 2024. https://concussionfoundation.org/programs/project-enlist12. CLF HelpLine | Concussion Legacy Foundation. Accessed January 27, 2024. https://concussionfoundation.org/helpline

Shanzeh Mumtaz Ahmed
Shanzeh Mumtaz Ahmed
Shanzeh Mumtaz Ahmed is a freelance medical writer and editor, and one of our science correspondents. Her professional writing niche is in rare disease, infectious disease, and gut health. An immunologist by training, Shanzeh did her graduate work in the field of autoimmunity, specifically multiple sclerosis. She enjoys science outreach and communication and has a particular interest in growing scientific curiosity by meeting people where they’re at and tailoring language and tone to make medical news accessible. Outside of work, she enjoys cross-stitch, hikes, and hanging out with her cat!
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