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        VOLUME 27, ISSUE 2 • JUNE 2023  Full issue »

Huntington’s Disease Youth Organization draws patients from every continent   

More than 10 years ago, Matt Ellison and BJ Viau wanted to create an organization dedicated to young people impacted by Huntington’s disease (HD). They did not want anyone to go through the isolation, stigma, and lack of awareness that can be present in this rare community. That was the beginning of the Huntington’s Disease Youth Organization (HDYO), an international nonprofit dedicated to supporting, educating, and empowering young people and families impacted by HD. 

In May 2020, HDYO was poised to have its inaugural International Young Adult Congress in Glasgow. This would have been the first event of its kind, but unfortunately, plans were halted due to the global impact of COVID-19. HDYO had two virtual Congresses in 2021 and 2022, but we knew that there was no substitute for the connection that only in-person events can provide. 

As the pandemic waned, the HDYO team immediately geared back up to bring Congress to Glasgow, Scotland, for the first in-person event in March 2023. This was the first international community-focused event since before the pandemic. 

Over the course of three days, we welcomed 337 young people, families, and professionals for the first in-person HDYO Congress in Glasgow, Scotland. Through the support of sponsors, donors, and partners, HDYO was able to offer 100 scholarships for young people to attend from all 6 continents, and that doesn't include the many other organizations who financially supported attendees as well. The goal of this event was to allow the community to make connections with others, receive mental and emotional support, and gain information on the latest in research and happenings in the HD community.

The event kicked off with a little Scottish flair: bagpipes. Attendees were formally welcomed by Charles Sabine, then participated in a series of breakout rooms to better get to know one another. We finished that evening with an official welcome at Glasgow Civic Chambers, where Ashley Clarke, HDYO Board Member, shared about the importance of the global community coming together. The second day began a day of celebrating the achievements of Enroll-HD. Attendees then were able to choose from a series of concurrent sessions featuring everything from mental health tools to personal perspectives with interactive panels of HDYO Ambassadors to scientific updates. We also featured afternoon sessions about the impacts of juvenile-onset HD. Participants who needed a break could enjoy some activities in the Chill Zone or visit some of our mental health professionals for individual sessions. The day ended with a dinner reception and dance hosted by Enroll-HD at Platform Event Space in downtown Glasgow. The event wrapped up Sunday with additional sessions and an awards ceremony. 

We were in awe of the amount of people who bravely shared their story and embraced others in the community who experienced this type of event for the first time. We had inspirational speakers (professionals & families), and many leaders in research gave updates about the science behind clinical trials. We also managed to have some fun. 

One young attendee said, “Congress was everything I expected and more. It was fun, social, empowering, educational, and inspiring. The feeling after congress was on cloud nine, like I was invincible... but most of all, I was hopeful about the future.”

This event truly echoed the inspiration for the initial creation of HDYO, when Matt and BJ began the organization. They wanted to create a safe environment for young people to know they are not alone while impacted by HD. At congress, attendees had the rare opportunity to be in rooms with others where for the first time, they didn't need to explain what HD is. They could simply focus on making life-long friendships and connections without any stigma or fear.  


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