**Sunset in the beautiful city of Prague (Czech Republic)**

In April, I had the privilege of representing the Huntington’s Disease Youth Organisation New Zealand (HDYO-NZ) at the HDYO International Young Adults Congress in Prague. The congress offered 3 days of fun activities and a mix of personal and educational sessions to promote sharing, learning and connection amongst over 350 youth impacted by Huntington’s disease (HD) who travelled from all over the world to attend congress.

**Day 1 wrapped! Dinner with a friend 😊**

Day 1 was all about SUPPORT. We started with icebreakers to allow us to start connecting with each other and put names to some faces. Next, Dr. Bonnie Henning-Trestman taught us a range of self-care tools that we could use to take care of ourselves over what promised to be an emotional weekend. Bonnie’s other half, Dr. Robert L Trestman (a.k.a., Bob) wrapped up the day’s programme by talking about the various kinds of grief experienced by those impacted by Huntington’s, including the grief from witnessing loved ones be affected by HD symptoms, or the anticipatory grief for those who are currently asymptomatic but at-risk or gene positive. The session was opened to the audience, allowing us to express how grief has manifested in our journeys with HD in the first of many vulnerable moments shared over the weekend. With regards to how to cope with all that grief, Bob reminded us that we have zero control over the tomorrow, suggesting that instead of trying to anticipate the future, we should perhaps focus on the only thing that we can control: how we choose to be and act in the right now. Ultimately, however, Bob acknowledged that grief in HD is complicated and incredibly tough, and it was okay to acknowledge and feel that. After that emotionally charged session, we were given the evening off and encouraged to head out into the beautiful city of Prague to grab dinner with a new friend.

Day 2 was focused on EDUCATION. The programme contained a rich assortment of talks by HD professionals with scientific or healthcare backgrounds, as well as personal sessions led by HD community members. On the drug development front, Dr. Rachel Harding (HD Buzz Editor-in-Chief) warmed us up with a session that introduced some of the terminology that we would come across in HD research and clinical trials. This gave us a good foundation for the updates delivered by the leading pharmaceutical companies in the HD space, including Spark Therapeutics, uniQure, Wave Life Sciences and Roche. These talks were interspersed with sessions aimed at providing valuable tools for those living with HD, covering topics such as how to navigate relationships and talk about HD with friends, family and children, family planning options and psychological support in HD. The programme would not be complete without the iconic “Hidden No More” talk by Charles Sabine, who was joined by a panel of HD professionals and advocates that addressed the topic of how to manage stigmas associated with HD.

The personal sessions were led by community members who gave their perspectives on common challenges faced by youth impacted by HD, and facilitated an open discussion with the audience, creating a safe space for anyone to share their experiences amongst a group of people who just got it. These sessions explored the impacts of being a young caregiver, the “two sides” to different families’ HD stories (through the eyes of a parent and their child, brother and sister and husband and wife), panellists with a range of gene status’ (positive, negative and in the “grey area” of 36-39 CAG repeats) sharing their testing stories, a “cultural exchange” led by an international panel sharing their experiences with HD from across the world, and panellists exploring the different realities of living at risk, life after testing positive and survivor’s guilt.

I had the privilege of facilitating the *At-Risk Panel*, leading an open and honest conversation with 2 incredible young ladies, Nikola (CZ) and Oviya (US), who were brave enough to share their stories and how the knowledge that they may carry the HD gene has impacted their lives.

After all that learning and sharing, a party was in order! At the conclusion of day 2, attendees gathered at Enroll-HD’s reception party for dinner and drinks and hit the dance floor to decompress after the biggest day of congress.

Last but not least, Day 3 had an emphasis on EMPOWERMENT. It was kicked off by HD Buzz’s Research Breakdown, where Dr. Rachel Harding taught us about key scientific concepts and drug targets under development for HD, followed by an update on numerous clinical trials investigating potential HD therapeutics. In keeping with HD Buzz’s tone, which strikes a sobering balance between hope and honesty, Rachel didn’t shy away from the size of the task at hand, nor the roadblocks encountered in previous HD clinical trials. However, she reassured the audience that “scientists love this kind of challenge” and that the focus for HD researchers and pharmaceutical companies was to work out “how can we learn from everything that’s happened and push forwards”.

Next was an open discussion between scientists, regulators and the HD community. The panellists broke down the steps involved in taking a drug from an idea in the lab, to clinical trial, all the way through to being approved for use on patients. The panel acknowledged the need for consultation with the HD community during this process, through forums such as the HD-CAB and the FDA “patient-listening sessions”, to ensure that trials are designed in a way that is accessible to participants and with end-points that are relevant to those living with HD. Reflecting on the collaboration between HD industry and community partners globally, Astri Arnesen (President of the European HD Network) highlighted that “in the rare disease world, we are quite a unique network”.

The last educational session was the Observational Studies Dating Game. In this game, HDYO Ambassadors represented different observational studies (Enroll-HD, CHDI Foundation, HD Clarity and HDYO Surveys & Registries) and had to pitch their study to fellow HDYO Ambassadors who were single and on the lookout for the perfect match. With the audience’s help, they had to choose which study (or studies, depending on their dating style) to swipe right on.

On the last day of congress, I had the chance to visit the beautiful new mural completed as part of Art4HD, a project which aims to increase Huntington’s disease’s visibility across the world through street art. This year, a mural was completed in Prague ahead of the HDYO Congress. The mural is titled “Awareness is the Seed of Change” and contains the portraits of real children from HD families whose t-shirts read, “Hope, Humanity, Huntington’s”.

The congress was closed by keynote speaker Jimmy Pollard, who delivered a powerful talk on Empowerment through Gratitude. Jimmy highlighted the advancements that have occurred in HD – from discovery of the mutant huntingtin gene in 1993, to potentially being on the cusp of having a therapeutic in the 2020s – all within the last third of his lifetime. This was a hopeful reminder that although it is easy to be disheartened by the setbacks faced in the field in recent years, if we zoom out and look at the big picture, there has been a huge amount of progress in a relatively short period of time. And with the current momentum in the field, this progress is certainly not stopping here!

The HDYO International Young Adults Congress brought together almost 400 young people impacted by HD for 3 days of education, vulnerability, and the start of lifelong connections. It was incredibly moving to walk into the congress floor of a huge hotel and see it overflowing with youth from all over the world, all connected by one thing: HD. A special sentiment that stood out to me was voiced by a fellow attendee, who looked around the room and reflected: “everyone here is like me.” And in a world where Huntington’s is a rare disease and you are lucky to find one other person who knows about it, that is healing.

HDYO-NZ was proud to partner with HDYO International as an official scholarship sponsor. This year, our funding went towards 2 New Zealand attendees, and we hope to continue supporting more local youth to attend these events in future. Here is what one of our scholarship recipients had to say about their experience at congress:

“Hi HDYO NZ

Thank you so much for the opportunity to attend the HDYO Congress.

This was such a pivotal experience for me. The connections I made were truly invaluable.

Meeting friends in person that I’d only known online was really special, and getting to speak with specialist caregivers, psychologists, neurologists, and researchers from all over the world was something I’d never be able to experience here in New Zealand.

I also connected with some amazing local Kiwis, and now we meet regularly to support each other, share ideas, and help spread awareness.

I’d absolutely recommend the HDYO Congress to anyone and everyone impacted by HD — it’s an experience that stays with you.”

If you are feeling disheartened that you did not make it to this year’s congress, fear not! This event takes place every 2 years, so you may get a chance to attend in 2027. In the meantime, you can check out recordings for a number of sessions from this year’s congress on YouTube here. We hope you enjoy them!