Looking forward to this year’s HDSA convention

I attended my first Huntington’s Disease Society of America (HDSA) Annual Convention when I was 9 years old, and have since gone more than 10 other times.

Families, clinicians, healthcare professionals, pharmaceutical companies, and more are present at the three-day event, which changes location every year. The convention is a great opportunity to meet new friends, learn from professionals, and get more involved in the Huntington’s community.

This year’s event will take place June 1-3 in New Orleans, and I’ve been told the expected attendance is over 900. Everything kicks off on Thursday with the HDSA Team Hope Walk and a welcome reception. Friday will be full of educational workshops about Huntington’s disease (HD), along with a National Youth Alliance (NYA) talent show and fundraiser closing out the evening. Saturday’s sessions will focus on clinical trial and research updates, and a gala will be held that evening to conclude the weekend and recognize those who have made an impact on our community.

I’m most looking forward to hosting an exhibit for HD Genetics, a platform that allows those at risk for Huntington’s disease to receive genetic testing and counseling from the comfort of their home. I had an exhibit last year, but the startup didn’t open for business until last August, so I’m excited to speak with families about the services we now offer. The HDSA convention will be a great place to ask the community what they’re looking for and gain valuable feedback on how to improve.

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Making future conventions more accessible

One thing to consider is how we can enable more people to attend future conventions. HDSA does a nice job of offering scholarships to local young people involved in NYA, as well as families attending for the first time, but there are still many financial obstacles that can make attendance difficult, and not enough funding for everyone.

In 2011, when the convention was held in Minneapolis, my dad and my sister, who were on the board of the HDSA Minnesota Chapter, helped jump-start scholarship funds and set an attendance record of over 1,000. Since 2012, convention attendance has teetered just below 1,000 (not including COVID-19 years). I’m not sure if costs are the main barrier, but if so, I wonder how HD stakeholders can help provide more funding to enable more people to attend.

Maybe there are other obstacles holding people back. What are they, and how do we knock them down? I dream of a day when 2,000 people attend this event every year to learn, connect, and fight back against HD as a united force.

Hope to see you there!

If there’s any chance you can make it to New Orleans next week, I encourage you to attend this event. I will say that attending can be emotional, depending on where you’re at in your HD journey and what you’re looking for. During this weekend, there’s no avoiding the different stages of Huntington’s, but it’s also an excellent opportunity to connect and learn from the best in our community. Representatives from many pharmaceutical companies attend, top healthcare professionals present new findings and perspectives, and advocates and family members provide support and guidance while welcoming everyone with open arms.

If you’re attending the convention, please stop by and say hello. If not, put it on your calendar for 2024!

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.