A weekend in North Carolina reaffirms that ‘HD Has Color’

A recent weekend in North Carolina was nothing short of magical. I was invited by the nonprofit advocacy group HD Reach to be the keynote speaker for their annual Education Day. The theme this year — “HD Has Color” — couldn’t have been more perfect.

It felt like an affirmation of one of my fundamental beliefs: that Huntington’s disease (HD) isn’t just a neurological condition, but also a lived experience that spans cultures, identities, and vibrant human stories. The weekend was all about those stories, and I’m honored to have been part of such a powerful and heart-opening event.

The weekend began with an intimate fireside chat held in a cozy, quaint park. It was the perfect setting to unwind and connect with others in the HD community. The energy was warm and welcoming, and I was in the incredible company of three fierce and fabulous women: Erin Paterson, Emma Wajswasser, and Christy Dearien. All of us are authors who have shared pieces of our HD journeys through the written word, and that evening we sat down to talk about our “why”: why we write, why we advocate, and why we share our truth with the world.

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The questions we answered during the chat were thought-provoking and personal: “What inspired you to write this book?” “Why did you choose to focus on Huntington’s disease?”

As we each took our turn, you could feel the collective heartbeat of the crowd — people nodding in understanding, some tearing up, others simply holding space for one another. We talked about the writing process, our individual challenges, and the triumphs that came from putting our stories out there. It felt like a sacred circle of vulnerability and power. We ended the evening full of gratitude, surrounded by nature and community.

Then came the big day, Education Day, and the moment I’d been preparing for: my keynote speech. As I took the stage, my heart was full. Looking out at the room filled with HD families, caregivers, medical professionals, and advocates, I was overwhelmed with emotion. I shared my personal journey with Huntington’s disease, which was marked by misdiagnosis, racial bias, resilience, and a commitment to living fully despite uncertainty. I poured my soul into every word, and when I finished, the room erupted into a standing ovation.

I was completely humbled by the love and feedback I received after the speech. So many people came up to me and thanked me for sharing my truth. They were interested in hearing my perspective as a woman of color.

Later that day, I had the honor of co-hosting a session with the brilliant Myriam Sollman called “Living Well with Intention.” Together, we explored the importance of self-care routines and the neuroscience behind why caring for yourself isn’t selfish — it’s necessary. We talked about intention-setting, the power of daily rituals, and how small acts of wellness can shift your mindset and improve your quality of life, even while managing a chronic illness.

There were so many fantastic sessions throughout the day, including panels and discussions that tackled real issues in the HD community, such as how to talk with your children about the disease; navigating cognitive changes; building a caregiver’s circle; and understanding what it means to be gene-positive or gene-negative.

And can we talk about lunch for a second? Because Carolina barbecue was served, and it was chef’s kiss delicious! Every bite was a reminder of how comfort food can be soul-soothing, especially when enjoyed in good company.

One of the most heartwarming moments of the day was watching the premiere of Wajswasser’s book character Bloopy the Alien. The children attending the event had a special child care space where they not only learned about empathy and understanding through Bloopy’s story, but also performed a play for the entire crowd. Wearing handmade masks and guided by Wajswasser’s narration, these little stars lit up the room. It was beyond adorable. It was a beautiful reminder that HD families include all ages, and that joy can be found even in difficult circumstances.

The weekend reinforced something I’ve known all along: that the HD community is strong, colorful, and full of heart. We are not defined by our diagnosis. We are authors, parents, children, dreamers, and warriors. And when we come together, we remind each other of our shared humanity, our collective strength, and the beauty that still exists despite the struggles.

Thank you, HD Reach, for making this experience possible. Thank you to everyone who showed up, shared a story, gave a hug, or simply sat and listened. North Carolina, you now hold a special place in my heart. I left with new friends, renewed energy, and a deeper commitment to my purpose.

HD indeed has color. And it also has community, courage, and so much love.

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.