The Joy of Gathering in Person at the Annual Huntington’s Convention

As of this writing, I’m preparing to attend the Huntington’s Disease Society of America’s (HDSA) annual convention in Atlanta from June 9–11. It’s been three years since the convention was last held in person, in Boston. Much has happened around the world since then, but we’re finally able to gather again to support, educate, and motivate one another on our journeys with Huntington’s. I am excited to learn from disease experts, hear inspirational stories from peers, and connect with old and new friends.

I attended my first HDSA convention more than 25 years ago. My mom had recently been diagnosed with Huntington’s disease (HD) and decided it was important to get involved with our local chapter. Luckily, the annual convention happened to be in nearby Bloomington, Minnesota. I have vague memories of helping set up for the event at a hotel and then hanging out in the hallway while the adults talked with one another.

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Since that initial convention, I’ve been fortunate to attend many more in cities across the U.S. From sitting outside of the conference room so the adults could talk, to forming friendships by the hotel pool, to attending as a professional in the pharmaceutical industry, to working the Huntington’s Disease Youth Organization booth, I’ve worn various hats at conventions and met some of my best friends along the way.

This year, I am most looking forward seeing my HD community, meeting professionals working to solve problems our community faces, and hearing from attendees about what they need on their HD journey.

The agenda will highlight presentations from clinicians and professionals from most of the pharmaceutical companies that sponsor clinical trials for HD. There will be discussions about genetic testing and counseling, as well as support groups for all ages.

I’m especially excited to have the opportunity to speak with fellow HD advocate Seth Rotberg at National Youth Alliance (NYA) Day on June 9 about observational HD trials and our upcoming patient listening session with the U.S. Food and Drug Administration. I’ll also be sharing updates on my latest pursuit to provide a better genetic counseling and testing option to people in the U.S. who are at risk for HD.

One of the convention highlights is always the Friday night NYA talent show. Young people take the stage to show off their various talents, with the goal of raising money for the NYA scholarship fund, which helps current or alumni NYA members get to the convention. This fundraising is vital, as young people are an important part of the HD community, but don’t always have the financial resources for travel and lodging expenses.

By the time you read this, the convention will have concluded. But don’t worry if you missed it — session recordings will be available on the HDSA website soon. I’m sure the sessions will be informative, so I encourage the HD community to check them out.

If you weren’t able to make it to Atlanta this year, be sure to mark your calendar for next year’s convention, which will take place on June 1–3, 2023, in New Orleans. It continues to be an exciting time in the HD clinical trial space, and there is no better place to take it all in than at an HDSA convention.

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.