Introducing My Family to the Amazing Huntington’s Community
Columnist B.J. Viau brings his wife and children to their first HD conference
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 forced my sister and me to attend these events. Maybe they didn’t want to find a babysitter, or maybe they thought it would be good for me to learn about the condition that would have a major impact on my life. Whatever their motive, I now feel that attending these events helped shape me into who I am today.
In the years since I met my wife, Jamie, I’ve continued to attend HD events, but mostly for business purposes and to represent the Huntington’s Disease Youth Organization and my startup, HD Genetics. I never had much of an opportunity to bring family.
Jamie and I now have a 9-year-old daughter, Harlin, and an almost 3-year-old son, Jett, which makes going to the grocery store a pain in the parental butt. Although I’ve tested negative for the disease, HD is in my family’s genes, and I’ve committed a significant amount of time to helping others affected by the condition. I wanted to find a way to introduce my family to this community that’s so incredibly important to me. Planning a trip to a conference would be a big endeavor, but I was determined to make it happen.
We live outside of Charlotte, North Carolina, so when I learned that this year’s Help4HD symposium was being held in Nashville, Tennessee, Oct. 7-8, I figured that was the perfect opportunity for all of us to attend. Nashville is about a seven-hour drive, or a one-hour flight, from Charlotte. Although the flight would have been a bit easier, it was much more cost-effective for us to rent a minivan where we could stash all of our stuff comfortably and road-trip through the mountains.
Another reason we chose this specific event was because there was a room dedicated to kids’ activities, which would allow Jamie and me to attend sessions and connect with people without having to chase little ones around. It couldn’t have been easy for symposium organizers to put all of the kids’ activities together, but it was so appreciated. I wish more conferences would offer a similar service, especially on weekends.
The kids had a blast meeting other kids, doing arts and crafts, and interacting with everyone. I first learned about Huntington’s disease when I was my daughter’s age, so I hope that, over time, she will be able to observe, listen, and learn more about HD at these events.
Fitting right in
One of my goals for the weekend was to familiarize Jamie with many of the friends, partners, and companies I talk her ear off about each week. Putting faces to names went a long way in making my rambling a little more meaningful, but I also enjoyed introducing the HD community to my special person.
Jamie has worked as a clinical research coordinator at a clinic that conducted trials for Parkinson’s disease, Huntington’s disease, and other movement disorders, so she’s relatively familiar with the basics of HD. We actually met through a movement disorder doctor who worked in her office, but I’ll save that story for a future column. I couldn’t have been happier with the warm welcome Jamie received from everyone. She was able to jump right in and meet others, when it might’ve been easier to hang back and feel like an outsider.
When the symposium was over, we packed up the minivan and headed back through the mountains, which were colored with beautiful fall leaves. I was filled with joy hearing my family talk about the wonderful time they had and how excited they were to attend the next HD event. Mission accomplished!
We enjoyed our time so much that we rented another minivan earlier this month and made the nine-hour trek to Tampa Bay, Florida, for the Huntington Study Group annual meeting. The event didn’t offer childcare, but fortunately, my dad was able to meet us there and hang out with the kids so Jamie and I could enjoy the conference.
I’m grateful my family has been able to accompany me on these trips, and I look forward to the next one!
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