Negative to Positives – a Column by B.J. Viau

B.J. has played a role in the Huntington’s disease (HD) community since his mom’s diagnosis in 1995. He and his family hosts an annual Hoop-A-Thon fundraiser that’s helped to raise over $1 million for the HD Society of America. BJ co-founded the HD Youth Organization, an international non-profit helping young people impacted by HD. He’s served as its board chairman for over 10 years. Professionally BJ has been working in the pharmaceutical industry for the past 10 years in various positions. He tested negative for HD, but remains committed to supporting the community and hopes this column will bring positive energy into many people’s lives.

How the HEATED Project Can Benefit the Huntington’s Community

As I wrote in a previous column titled, “An Abundance of Huntington’s Disease Info Awaits at Upcoming Virtual Conferences,” there are many ways to learn about the latest and greatest happenings in the HD community. I attended last month’s Huntington’s Disease Youth Organization’s International Young Adult Virtual Congress,…

Got Questions About Joining a Huntington’s Clinical Trial?

There is a robust pipeline of potential therapies for Huntington’s disease (HD), which I’ve discussed in previous columns. All of the current and future clinical trials provide real hope for this community. However, people typically aren’t allowed to participate in two clinical trials at the same time, and…

No Matter Your Hardships, Today Is a Great Day to Be Alive

I’ve lost two moms in my lifetime. My biological mom, Debbie, who was with me for the first 23 years of my life, passed away in 2011 after a 15-year battle with Huntington’s disease (HD). When she was diagnosed, we learned about the progression that inevitably would lead to…

Would You Want to Know If You Have Huntington’s?

Editor’s note: This column briefly mentions the topic of suicide. Please find resources for help at the end of the column. Unlike many rare genetic disorders, Huntington’s disease doesn’t have an approved treatment regimen that will halt, stop, or slow disease progression. However, it is relatively simple to undergo a…

The Value of Consulting a Genetic Counselor During Testing

As I briefly touched on in my previous column, “Opportunities for a Better Genetic Testing Process,” the testing process in the Huntington’s disease community is a bit like the Wild West. Depending on your location, there are so many variables that make going through testing way more stressful than…