Negative to Positives — B.J. Viau

Help4HD is a nonprofit organization with a mission to educate the world about Huntington’s disease (HD) and juvenile Huntington’s disease. Its aim is to serve our community and provide information, education,…

In my previous column, I wrote about the need for new genetic testing options for people at risk for Huntington’s disease (HD), and teased a new passion project I’ve been working on.

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…

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…

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,…

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…

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…

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…

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…

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…

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…

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…