Semin Neurol 2020; 40(04): 461-468
DOI: 10.1055/s-0040-1713621
Review Article

Chronic Traumatic Encephalopathy: Advocacy and Communicating with the Public

Madeline Uretsky
1  Boston University Alzheimer’s Disease and Chronic Traumatic Encephalopathy Center, Boston University School of Medicine, Boston, MA
2  Department of Neurology, Boston University School of Medicine, Boston, MA
,
Christopher J. Nowinski
1  Boston University Alzheimer’s Disease and Chronic Traumatic Encephalopathy Center, Boston University School of Medicine, Boston, MA
3  Concussion Legacy Foundation, Boston, MA
› Author Affiliations
Supported by: National Institute of Neurological Disorders and Stroke 1U01NS086659–01
Supported by: National Institute of Neurological Disorders and Stroke U01NS093334
Supported by: National Institute of Neurological Disorders and Stroke R01NS078337
Supported by: National Institute of Neurological Disorders and Stroke R56NS078337
Supported by: Department of Defense W81XWH-13–2-0064

Abstract

Over the past 40 years, advocacy groups have been instrumental in raising awareness for neurodegenerative diseases such as Alzheimer's disease. More recently, advocates have emerged to educate about sports concussions and chronic traumatic encephalopathy (CTE), including the Concussion Legacy Foundation (CLF). CTE is a neurodegenerative disease caused in part by repetitive head impacts (RHI). While the majority of CTE research has focused on studying former American football players, CTE has also been found in military personnel, victims of domestic violence, and contact sport athletes from high school to professional levels of play. Advocates' many goals include creating a culture of brain donation and modifying youth contact sports to decrease RHI. Here, we provide the first review of CTE advocacy, summarize the accomplishments of the CLF, and consider the connections between CTE advocacy, research, and legislation over the last decade.

* Madeline Uretsky and Christopher J. Nowinski contributed equally to this article.




Publication History

Publication Date:
26 July 2020 (online)

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