Embracing my community: my first HDSA convention

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As May rolls around, it brings with it Huntington's disease awareness month, a time when I typically flood social media with awareness posts. But this year, I wanted to share something special with you because it's also the month of the annual Huntington’s Disease Society of America (HDSA) convention.

For me, one of the most crucial aspects of my journey with HD is the incredible community I've found along the way. I vividly recall the time when I was diagnosed as gene positive at 18 years old and how getting plugged into the HDSA changed everything for me. It was there that I met some of my closest HD brothers and sisters, including my dear friend Bryan Medrano.

Bryan and I quickly bonded and became inseparable. We joined forces to help out at events and fundraisers, and I found solace and support within the welcoming embrace of the Northern California chapter. I also found the Johnson family (or maybe they found me), who took me under their wing with boundless love and leadership.

I'll never forget the excitement when the Johnson’s told me about the upcoming national convention in Atlanta, Georgia. As board members, they were all planning to attend. Little did Bryan know, he was to be honored as 2004’s “Person of the Year” that year at the convention. The Johnson’s graciously offered to help cover my expenses to join them in celebrating Bryan.

Bryan was so well deserving of the “Person of the Year” title.  He was completing an extraordinary journey – biking across the United States in just one week with three of his friends to raise money and awareness for HD. And did they ever!

That first convention holds a special place in my heart. I remember it like it was yesterday, surrounded by a community of individuals who, like me, were navigating the challenges of HD. It was there that I discovered the HDSA’s National Youth Alliance, a gathering of young people under 30, coming together to share stories, support one another, and engage in uplifting activities. In that moment, I realized I was not alone in this battle.The national youth alliance is where I met some amazing friends that I still keep in touch with today. I especially love that at all of the conventions they always take time to really highlight the kids with juvenile hd. They always make it all about them like they are VIP. Because of that I have been to quite a few times. 



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