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HDYO Celebrates 5 Years!

February 24, 2017

Huntington's Disease Youth Organization

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


February 22, 2017


Earlier this month, HDYO turned 5 years old. But what have we done in that time? The answer, fortunately, is lots!

It does feel slightly crazy to think HDYO has been a non-profit for 5 years now. This ‘project’ that I started voluntarily working on in late 2010 as my way of wanting to do something to help young people impacted by HD worldwide. At that point HDYO was just an idea, now we are a respected organization within the HD community and we’ve achieved some remarkable feats (even if I’m being biased). Here’s a run down of the main feats we have achieved in 5 years:

  • Our website has been visited by over 2 million people

  • The site is available in 10 languages

  • 2,000 people have contacted us for support/advice from over 75 countries

  • Our educational content has been shared over 60,000 times

  • Our educational videos have been watched 200,000+ times

  • We have over 12,000 followers (accounts, social media)

  • We've done 5 youth camps on 3 different continents in which over 250 young people have attended for free

  • We have a staff team of 2 and a volunteer team of 175+

Personally, this fills me with joy to see such progress in many regions of the world for support and opportunities for young people. We’ve come a long way in a fairly short amount of time, we know there is more to do, our goal is always to reach more young people in more regions of the world and bring the support and education they deserve to them. We will continue on this mission for years to come.

I would like to thank everyone who has contributed to HDYO over these years. To all our volunteers who help us punch well above our weight, to our staff, to our board who have given so much time and effort to develop HDYO. To all the professionals, families and mostly to young people in the HD community who have trusted us in times of need. We hope HDYO has been useful for you as at the end of the day, that is the only stat we want to see – your feedback that we are doing things you want us to do. If we’re not, contact us (feedback@hdyo.org) as our motto says ‘for young people by young people’. HDYO belongs to all young people impacted by HD and if we aren’t doing enough in some areas of the world we want to know what you want us to do, or if you want to get involved again just let us know! Our volunteers are mostly young people in the HD community. We live by our motto in this case.

I’m excited about the years to come, we are aiming to hire a 3rd staff person this year as our capacity has been maxed out for quite a while, we have big plans moving forwards to bring more to the HD community, especially for young people. No matter what happens from here, I will look so fondly of the time I’ve spent working on HDYO and the impact we have made.

All the best

Matt Ellison
News Team Reporter

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