Negative to Positives — B.J. Viau

I joined the war against Huntington’s disease (HD) back in 1995, after my mom, Debbie, underwent genetic testing that confirmed she was gene-positive for HD. Her father also carried the genetic mutation, but he passed away in…

Note: This column was updated Sept. 1, 2023, to correct that phase 1 clinical trials do involve human participants. I’ve always felt that the most impactful way for me to accelerate the development of new treatments for…

I’ve recently seen some posts in Facebook groups and Reddit threads about the emotional toll of testing negative for Huntington’s disease (HD). Some share that they no longer feel a part of the HD community. Others say they’re…

I attended my first Huntington’s Disease Society of America (HDSA) Annual Convention when I was 9 years old, and have since gone more than 10 other times. Families, clinicians, healthcare professionals, pharmaceutical companies, and more are present at…

An encouraging number of clinical trials are currently recruiting, or soon will be, for people affected by Huntington’s disease (HD). I recently wrote about the CAP score, a mathematical calculation that many HD clinical studies use…

Thirteen years ago, my good friend Matt Ellison and I started to form what is now the Huntington’s Disease Youth Organization (HDYO). Matt and I both grew up with a parent who had Huntington’s disease (HD),…

I recently watched a webinar hosted by the Huntington’s Disease Society of America that highlighted the new Roche/Genentech clinical study, GENERATION HD2 (NCT05686551), which is testing tominersen in people with Huntington’s disease (HD). I was…

The risk of potentially having Huntington’s disease (HD) if you have an inherited gene mutation has often been described as a coin toss — you either have the mutant gene that causes HD or you don’t. Your…

The new year is in full swing, and I’m excited for what 2023 has in store for the Huntington’s disease (HD) community. Looking back, it feels like the past three years haven’t gone in the right direction. We…

Deciding whether to undergo genetic testing for Huntington’s disease (HD) is a personal choice. As Ana Pena reports in a 2019 article for Huntington’s Disease News, researchers have found that “as many as 90% of individuals who…

Ever since my mom was diagnosed with Huntington’s disease (HD) in 1995, I’ve been attending all types of support, fundraising, and educational events. I’ve had the honor of traveling the world and meeting people from many countries…