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, and resources. Help4HD hosted its…

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’m excited to share a…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…