Harnessing the power of connection in the HD community

Some experiences stay with you long after you return home, and my recent trip to New Orleans for advocacy work was one of them.

I arrived expecting to share my story, learn more about Huntington’s disease (HD), and connect with members of the HD community. What I experienced was something much deeper.

The Huntington’s Disease Youth Organization (HDYO) and Ochsner Health partnered for a two-day retreat that created space for education, conversation, vulnerability, and connection. What made this gathering especially meaningful was the opportunity to be surrounded by other members of the HD community who identified as African American. That representation meant more to me than I can fully express.

Huntington’s disease is already rare, and there have been times throughout my journey when I have felt isolated or misunderstood. As a Black woman living with HD, I have also experienced misinformation and dismissal. I have personally been told that Black people don’t get HD. Because of experiences like that, there was something powerful about walking into a room where I didn’t have to explain my presence or prove that people who look like me are affected by this disease.

I could simply be there.

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Sitting with people who understand

The first day of the retreat was intimate and informal. I had the opportunity to share my story with the group, but it never felt like I was standing apart from everyone as a speaker. It felt like we were sharing the space together. Something magical and sacred filled that room.

We talked about our hopes and fears, caregiving, family dynamics, uncertainty, and the emotions that come with having HD woven into your family story. There were tears, but there was also laughter. There were moments when someone shared an experience and you could feel recognition moving through the room.

Sometimes there is nothing anyone can say to fix what HD takes from us or threatens to take from us. Sometimes what matters most is sitting with people who understand why you are afraid, why you are tired, or why a victory that may seem small to someone else feels enormous to you.

I felt deeply connected to everyone there.

We shared meals, conversations, stories, and even an indoor walk. Those informal moments were just as meaningful as the scheduled activities because connection happened naturally. We could speak openly about things that are often difficult to explain outside of the HD community. For those two days, there was a sense of belonging that I will not forget.

The second day focused on education, and it was honestly one of the most informative HD education days I have attended.

I was impressed by how thorough the speakers were while still making the information accessible. The presenters broke those concepts down into plain English without making the audience feel talked down to.

Jenna Heilman from HDYO presented on the impact of HD on young adults and families. I also appreciated the session on memory, cognition, and mood changes. These symptoms sometimes receive less attention than chorea and other movement symptoms, yet they can dramatically affect daily life and relationships. The information was practical, compassionate, and easy to understand.

I was equally impressed by the speech therapist, neuropsychologist, and neurology leadership. Their presentations reflected expertise while never losing sight of the human beings behind the diagnosis. That matters. The best education does more than give people information. It helps us feel respected, empowered, and less afraid of what we don’t understand.

I have to give a big shout-out to both Jenna and Marisa Pecoraro for helping make this experience possible. Creating spaces where people can connect, learn, and feel seen is important work.

I also want to thank Dom Thomas from Ochsner Health, the clinic coordinator of the HDSA Center of Excellence at Ochsner Health. Your warmth, dedication, and care were felt throughout the retreat.

To David Houghton, Brian Mizuki, Alicia Cantrell, Anne Marie Savoy, and the entire Ochsner Health team: Thank you for the knowledge you shared, the conversations you welcomed, and the space you created. Thank you for listening as much as you taught.

I left New Orleans feeling full in the best possible way — full of gratitude, knowledge, connection, and hope.

Huntington’s disease brings difficult realities into our lives, but experiences like this remind me that it also introduces us to extraordinary people. For two days, we shared stories, meals, tears, laughter, fears, and hope.

In that sacred space, I was reminded that none of us has to carry the weight of HD completely alone.

To everyone I met in New Orleans: You are amazing humans. The HD community is fortunate to have you, and I feel grateful that I had the opportunity to share this unforgettable experience with you.

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.