Author Archives: B.J. Viau

I’ve been a part of the Huntington’s disease (HD) community since my mom was diagnosed in 1995. I was 9 at the time. The gene mutation responsible for the disease had been discovered two years earlier, and community leaders were excited about the potential of the discovery to lead…

Getting the Huntington’s disease genetic test is a major life decision that weighs heavily on a person socially, emotionally, psychologically, and physically. I’ve written about the genetic testing process and its ramifications in many of my previous columns. But what if a genetic test didn’t only tell you your…

As I wrote in a previous column titled, “An Abundance of Huntington’s Disease Info Awaits at Upcoming Virtual Conferences,” there are many ways to learn about the latest and greatest happenings in the HD community. I attended last month’s Huntington’s Disease Youth Organization’s International Young Adult Virtual Congress,…

In a previous column, I talked about the many questions one might have when signing up for a clinical trial. Lots of questions, concerns, risks, hope, and opportunity come with participating in a trial that requires you to take an experimental medicine. But participation in clinical trials isn’t…

Every day, people around the world learn more about Huntington’s disease (HD). We know so much today, but we will know more tomorrow, and this knowledge will continue to exponentially grow. Researchers, scientists, clinicians, patients, caregivers, and advocates all have knowledge to gain. If you ever think you know it…

There is a robust pipeline of potential therapies for Huntington’s disease (HD), which I’ve discussed in previous columns. All of the current and future clinical trials provide real hope for this community. However, people typically aren’t allowed to participate in two clinical trials at the same time, and…

I’ve lost two moms in my lifetime. My biological mom, Debbie, who was with me for the first 23 years of my life, passed away in 2011 after a 15-year battle with Huntington’s disease (HD). When she was diagnosed, we learned about the progression that inevitably would lead to…

I have only known one way to live in a family affected by a rare disease, specifically Huntington’s disease (HD). That way is not to sit back and wait for HD to come, but rather to seek it out and attack! I don’t mean attack in a physical sense, of…

Editor’s note: This column briefly mentions the topic of suicide. Please find resources for help at the end of the column. Unlike many rare genetic disorders, Huntington’s disease doesn’t have an approved treatment regimen that will halt, stop, or slow disease progression. However, it is relatively simple to undergo a…

As I briefly touched on in my previous column, “Opportunities for a Better Genetic Testing Process,” the testing process in the Huntington’s disease community is a bit like the Wild West. Depending on your location, there are so many variables that make going through testing way more stressful than…