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Happy 10th Anniversary, HDYO!

February 07, 2022

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


Matt Ellison, a young person from and Huntington's disease family, wanted to use his own experience of growing up with a parent who had HD to change the landscape for other children and young people. Matt had the opportunity to connect with other young people at the HD World Congress in 2009 where he met BJ Viau. These two young men, along with other young people, developed an idea into a reality that became HDYO.

Their passion and belief that children and young people needed support, education and connections enabled a global shift in HD community. After 2 years of fundraising, writing, researching, lobbying for partnership and engaging decision makers, HDYO was officially launched in Feb 2012 as a non-profit with the website hdyo.org going live. Since 2012, HDYO has grown and exceeds our expectations. We hired our first staff member, in 2013 and continued to expand over the next decade.

Our staff was and still is to this day supported by a working but voluntary board of directors and a dedicated global team of volunteers who help with everything from translation, feedback and fundraising to representing HDYO at events and serving as Ambassadors.

We are in awe of Matt and BJ for their vision for HDYO and all of the hard work they've done and continue to do for young people. We feel so incredibly proud of the impact made to thousands of families across the world. While we reflect on this past decade, we know that our job is not done. We continue to evolve our services and programs to adapt to the growing needs of the Huntington's disease community. ," said Jenna Heilman, HDYO Executive Director.

Look for more details as we continue to celebrate HDYO's 10th Anniversary.

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