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

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 HDYO.org 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.

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