B.J. Viau,  —

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…

I never knew what participating in medical research was all about when I was growing up. For 10 years, I was an active member of the Huntington’s disease community, but I had no clue about research. One reason was because from 1999 to 2009 there wasn’t much research to participate…

As a Huntington’s disease (HD) community advocate, I am always trying to listen and learn from anyone who may help the cause. This means listening to people outside the HD community, as well as those who are part of it. Earlier this year, I was connected to a young…

I’ve worn many hats as a Huntington’s disease (HD) community advocate over the past 25 years, after my mom was diagnosed in the early 1990s. I’ve been a caregiver to my mom, a person at risk, a grassroots fundraiser, a public speaker, a pharmaceutical sales rep for an…

Where do you go to find support and information about Huntington’s disease (HD) when you need it most? This question will certainly receive a plethora of answers. Having been part of the Huntington’s community for 25 years, I’ve utilized many different options based on my needs. In today’s world of…

Getting a new treatment to people with rare conditions like Huntington’s disease is difficult. It takes lots of intelligence about a specific topic and immense time and energy. It requires funding to fuel the time and energy of those intelligent people. It depends upon a correct hypothesis that is executed…

I’ve been a part of the Huntington’s disease (HD) community since my mom was diagnosed in 1995. I was 9 at the time. The gene mutation responsible for the disease had been discovered two years earlier, and community leaders were excited about the potential of the discovery to lead…