After years of planning, HDYO’s first in-person congress finally happened

Young people affected by Huntington's met in Glasgow, Scotland, this month

B.J. Viau avatar

by B.J. Viau |

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Thirteen years ago, my good friend Matt Ellison and I started to form what is now the Huntington’s Disease Youth Organization (HDYO). Matt and I both grew up with a parent who had Huntington’s disease (HD), so our mission with the nonprofit was to support, educate, and motivate other young people affected by the condition.

Over the years, we’ve had some lofty but focused goals.

The first was to create a website where young people could safely learn about HD and avoid misinformation. Our hope was that would appear on the first page of results when someone searched “Huntington’s disease” online.

The second was to create summer camps where young people from HD families could connect with one another and emerge stronger than ever before. We held camps from 2014-19, and they were a major success.

The third was a goal heavily pushed by one of HDYO’s longtime leaders, Cat Martin: to bring young people from around the world together in a single location for the first international HD youth conference.

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Making our goal a reality

In May 2018, we announced that the first conference, which we called the HDYO International Young Adult Congress, had been scheduled for May 2020 in Glasgow, Scotland. I still remember the WhatsApp message I sent to Matt, Cat, and other HDYO staff in February 2020, where I jokingly asked: “Is this virus thing going to cancel the congress?” Little did I know that just 48 hours later, it did.

After nearly two years of planning, this was a major disappointment, especially for the hundreds who’d already booked travel. My family even had plans to tour Scotland after the congress was over.

Like the rest of the world, HDYO had to pivot due to the pandemic. The organization hosted virtual congresses the past two years, but it just wasn’t the same.

That’s why I was so excited that young people from around the globe were finally able to convene March 17-19 for HDYO’s first in-person congress.

Young people, community stakeholders, healthcare professionals, motivational speakers, and representatives from a handful of HD-focused pharmaceutical companies met in Glasgow for three days of education, motivation, support, and connection. The agenda was packed with informative sessions about the latest clinical studies and the genetic testing process, as well as young people advocating for change. It was a weekend that was five years in the making.

I unfortunately wasn’t able to attend, so my fear of missing out, or FOMO, was real, but I was thrilled for everyone who was able to go. A major shoutout to Cat for being the visionary and bringing this congress to life in her home country. It was a major lift for the small but mighty team of HDYO employees and volunteers to host an event this size. Big props to everyone who took the time and energy to attend. I spoke with a handful of attendees at length and saw many social media posts about what an amazing and life-changing weekend it was. Congrats to all!

I can’t wait to hear what’s next for HDYO.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.


erin paterson avatar

erin paterson

I was at the event with my family and it was simply amazing. We met so many wonderful people and learned so much more about HD. It was wonderful to feel like a part of such a supportive community. Congratulations to you for founding HDYO and to everyone who put in so much hard work to make this happen.

B.J. Viau avatar

B.J. Viau

This is great to hear, Erin! The team at HDYO, especially Jenna H, did an amazing job pulling through the vision and bringing the event to life to make a positive impact on so many.


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