The main reason that agreed to help Matt start HDYO, was because I lived through everything that young people go through while in a family impacted by HD. I watched my Mom slowly progress which resulted in a somewhat dysfunctional family situation. I endured the struggles telling friends and a community about the difficulties of HD. I experienced the emotional rollercoaster of my sister and I both being at-risk. I’ve had to say goodbye to my Mom and many other HD family friends that we have met along the way.

These times weren’t easy, but there were a few happenstance occurrences that I was brought upon that changed my outlook from a young age which brought me the support and education that I needed to stay focused and positive on life’s journey. One of these occurrences was my parents encouraging our family to get involved in our local HD non-profit which turned into holding and annual fundraiser called a hoopathon. We held the event for 15 years and over that time I used the Hoopathon as a PLATFORM. It was a PLATFORM to provide me the opportunity to talk about HD to my friends. A PLATFORM for my friends to show me support. A PLATFORM to meet other families with HD. A PLATFORM that provided me more knowledge about HD. Without the Hoopathon, where would I be? I really have no idea.

Not everyone has a hoopathon PLATFORM spring up at a young age and that is why HDYO was needed. We created HDYO to provide the support and education young people need, but to also allow any young person around the world to use HDYO as their own PLATFORM. A way to get involved in a cause and fight back against the disease. A PLATFORM that provides opportunities to advocate, volunteer your skills, host an event, volunteer your time etc.

We have people all around the world who use HDYO as a PLATFORM in a variety of ways: to translate our website and materials into new languages, write news articles, hold fundraising events, produce school projects, donate time for our board of directors, volunteer at our international camps, organize our e-newsletter, manage our social media accounts etc.

My family doesn’t host the hoopathon anymore so I have shifted my platform to my HDYO responsibilities. These efforts have changed over the years, but have always aligned with what I am currently able and willing to do. Today, as the volunteer chairman, I give back what time/energy I am able into trying to put a strategic vision for HDYO into place. It’s a spot I currently enjoy, but my favorite part of the role is finding opportunities for others to join the HDYO or other HD platforms. Seeing young people living happier and healthier lives by getting involved!

Do you have any ideas on how you can use HDYO as a PLATFORM? I (and our team) am always here to have a discussion and throw ideas around to figure out the best opportunity. Shoot me an email or give me a call anytime.

BJ Volunteer Board Chairman