BJ Viau

Chicago, IL

I have been involved in the NYA since it first started to take form over 10 years ago when my parents started dragging me to the HDSA national conventions.  Although I never really wanted to attend the conventions, I always seemed to have a lot of fun meeting new people and feeling lots of support.  Over the last fifteen years I have attended around eight national conventions and hundreds of local events; fundraisers, support groups, education days, worldwide conventions etc.  The opportunity to go to these events and meet many new people and friends has made my journey with HD so much easier.  Although I was able to find a lot of support from the HD community, I also had many hard times growing up with a mother affected with HD.  My Mom, Debbie fought a courageous battle with HD and taught me to take charge of HD instead of letting it take charge of me and I have been trying to live that out ever since.  Being a young person in an HD home is very difficult, but through education and support I have found peace with HD and turned it into a positive instead of a negative.  Through the many ups and downs of being a young person impacted by HD, I was given an inner passion to try and help others impacted by doing things that I love to do.  I started by raising money hosting hoopathons (I loved basketball) for fifteen years, then I drifted to spreading awareness through public speaking  (for some reason I enjoy speaking in front of people) and now I currently help run a support organization, the Huntington’s Disease Youth Organization (HDYO) by being the chairman of the board (I have a passion for running businesses).  By finding a way to help the cause through things that I love to do, I feel like I am making a difference to one day end Huntington’s Disease.  I invite all young people around the country (and the world) to find a way to support the NYA and HDSA through something that they love to do!  Lets make a difference together!