Today the Journal of Huntington’s Disease (JHD) published my article “Striving for a Realistic and Unapologetic View of Huntington’s Disease,” which describes how this blog has helped give voice to the HD community since 2005.
In addition to the 322 articles of this blog, I have written about HD in EHDN News, The Chronicle of Higher Education, Huffington Post, and collections of essays produced by HD advocates.
My JHD article is my first for a peer-reviewed scholarly journal – a key in my quest to inform the HD community and deepen my exploration of the history of the HD cause.
The JHD, a scientific journal started in 2012, focuses on research, with occasional articles by advocates. My article is a “Perspective” piece.
As I report in the JHD, a fellow HD gene expansion carrier viewed my blog as exposing families’ difficult struggles with HD in a “realistic and unapologetic way.”
My blog “has explored major challenges for the HD community, has become a key reference for HD families, and has chronicled the quest to defeat the disease,” the JHD abstract states.
In the article, I analyze the blog’s thematic impact, featuring a table noting the dozens of HD-related topics covered in 314 articles produced by April 2022, including advocacy and awareness-building, clinical trials, genetic testing, and coping strategies.
The publication of the article also “marks the extraordinary feat of an HD gene expansion carrier continuing to blog in his 60s.” In January, the blog will enter its 19th year.
Please click here to view the open access article, including a downloadable PDF.
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