Last spring, a colleague of mine alerted me to a job opening at the Huntington Study Group as the deputy editor of HD Insights. “Fantastic!” I thought. “I’m skilled at managing publications (having worked for the University of Miami, Penn State University, the Pew Charitable Trusts, and other organizations), and I have a background in biology (with degrees from the University of Tennessee and the University of Georgia).
But what is Huntington’s disease?” I’d heard of it, but I admit I had to look it up before deciding to apply for the position.
I quickly learned about the devastation that HD—considered by some to be the cruelest disease known to man—has on patients and their families. But I also learned that researchers around the world are attacking the disease from every possible angle, motivated by the intellectual challenge that HD presents, but more importantly by finding treatments and eventually a cure for patients.
Unfortunately, I wasn’t alone in my ignorance of Huntington’s disease; much of the lay public is equally uninformed. But that is changing through the efforts of those involved in HD research and outreach. Take Charles Sabine, for example. His work to bring awareness to HD by soliciting the recognition of Pope Francis is described in this issue of HD Insights.
Also in this issue, Dr. Xiao-Jiang Li of Emory University, talks about his work to inactivate the mutant huntingtin gene in adult mice using the CRISPR/Cas9 system. In addition, Katherine High, president and chief scientific officer at Spark Therapeutics, discusses her company’s efforts to use gene therapy to treat congenital blindness, which has implications for Huntington’s disease.
Coincidentally, a few weeks before learning about the deputy editor position at HD Insights, a man at a local park caught my attention and that of my young daughters. The man seemed to be twitching uncontrollably. “What’s wrong with him, mommy?” my youngest daughter asked. “I don’t know, sweetie,” I responded.
But now I do know, and I am determined to provide you, the readers of HD Insights, with the best possible source of information about HD, including current research findings, an inside look at ongoing clinical studies, and stories about the people who are searching for a cure.
After browsing this issue of HD Insights, I invite you to view the periodical’s new website at WEB ADDRESS. There, you will find an online form on which to submit your story ideas for a future issue of HD Insights, or you can email me directly at HDInsights@hsglimited.org. I look forward to hearing from you!
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