Author Archives: B.J. Viau

FDA Patient Listening Session Set for Huntington’s Disease

When I stepped away from my role as board chair of the Huntington’s Disease Youth Organization in 2020, I knew it wouldn’t be long before I found my next Huntington’s passion project. The passion in me is deeply rooted and originally created through my mom, who passed from Huntington’s…

The Importance of a Spinal Tap in HD Research

I traveled last month to the University of Wisconsin-Madison to participate in an observational research study called PREVENT-HD. I’ve written about the importance of participating in trials, and the purpose of the PREVENT-HD study is to develop tools to find and track subtle, but measurable, changes in behavioral,…

Why I Take Part in Huntington’s Disease Research

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…

Learning About Other Diseases Improves HD Advocacy

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…

We Need Realistic Timelines for Huntington’s Treatments

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…