Negative to Positives — B.J. Viau

I never knew what participating in medical research was all about when I was growing up. For 10 years, I was an active member of the Huntington’s disease community, but I had no clue about research. One reason was because from 1999 to 2009 there wasn’t much research to participate…

As a Huntington’s disease (HD) community advocate, I am always trying to listen and learn from anyone who may help the cause. This means listening to people outside the HD community, as well as those who are part of it. Earlier this year, I was connected to a young…

I’ve worn many hats as a Huntington’s disease (HD) community advocate over the past 25 years, after my mom was diagnosed in the early 1990s. I’ve been a caregiver to my mom, a person at risk, a grassroots fundraiser, a public speaker, a pharmaceutical sales rep for an…

Where do you go to find support and information about Huntington’s disease (HD) when you need it most? This question will certainly receive a plethora of answers. Having been part of the Huntington’s community for 25 years, I’ve utilized many different options based on my needs. In today’s world of…

Getting a new treatment to people with rare conditions like Huntington’s disease is difficult. It takes lots of intelligence about a specific topic and immense time and energy. It requires funding to fuel the time and energy of those intelligent people. It depends upon a correct hypothesis that is executed…

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…