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 1990, when I was only 3 years old. I was just…

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 Huntington’s disease is to quicken recruitment for clinical trials. When such…

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 exhausted after running so fast and for so long from this…

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 the three-day event, which changes location every year. The convention is…

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 to find participants who are at comparable points along their HD…

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), so our mission with the nonprofit was to support, educate, and…

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 enthused to hear all of the questions from the community that…

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 kids will either be at risk or they won’t. It’s easy…

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 still lack disease-modifying therapies, legislative support for the HD…

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 have a parent with Huntington’s choose not to take a…

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 who’ve been affected by HD. When I was young, my parents…