B.J. Viau,  —

I started doing a lot of research about genetic testing for Huntington’s disease (HD) in 2019, after years of hearing stories from people in the community who’d had poor experiences. I came to the conclusion about a year into my research that if I didn’t try do something about…

As I’ve shared in previous columns, several Huntington’s disease (HD) advocates, including myself, were granted a patient listening session with the U.S. Food and Drug Administration (FDA), focused on people who are gene-positive for HD but have not yet developed symptoms. In preparation for the session, which took…

The Huntington’s Disease Society of America’s (HDSA) annual convention is one of my favorite events to attend, as I wrote in my previous column. It’s a weekend full of learning from experts, hearing about the latest clinical trial and research updates, connecting with community stakeholders, and enjoying…

As of this writing, I’m preparing to attend the Huntington’s Disease Society of America’s (HDSA) annual convention in Atlanta from June 9–11. It’s been three years since the convention was last held in person, in Boston. Much has happened around the world since then, but we’re finally able to…

In my previous column, I shared that the U.S. Food and Drug Administration (FDA) accepted the request submitted by my fellow advocates and me to host a patient listening session focused on people who are gene-positive for Huntington’s disease (HD), but have not yet developed symptoms. Our session is…

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…

Last week, I was listening to GC Chat, a genetic counseling podcast, and it got me thinking about the Huntington’s disease (HD) genetic testing process. In Season 3, Episode 3, “A Heavy Burden,” hosts and genetic counselors Ashley Crook and Ellenore Martin discuss a case in which a…

In many previous columns, I’ve shared the statistic that only about 10% of those at risk for Huntington’s disease (HD) have chosen to get predictive genetic testing. This is a brave decision for the few in this small slice of the HD pie, considering that there aren’t…

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,…

It’s somehow already Thanksgiving week here in the U.S. Where did the year go? This is the perfect time to reflect on the year and count our blessings. Nobody’s life is perfect, and those of us in the Huntington’s community have definitely had our fair share of struggles and tough…