Visiting Wave Life Sciences gave me hope for the future of HD research
I'm so thankful for the scientists who are dedicated to our community
When I stepped off the plane in Boston, I felt a wave of gratitude. Everything about this trip felt first class, from the thoughtful arrangements to the sense that every moment had purpose. I had been invited to speak at Wave Life Sciences, a biotechnology company devoted to advancing treatments for genetic diseases like Huntington’s (HD). It was a full-circle moment for me, as someone living with HD, to stand before the people whose work may one day change patients’ futures.
The energy at Wave was warm, curious, and deeply human. I was there to share my story, a journey that has been anything but typical. When my symptoms began at age 35, I was told I “couldn’t possibly” have HD because of my race. For years, I lived in confusion and fear, misdiagnosed while my symptoms quietly worsened.
Later, I learned that long-term exposure to low levels of gas and carbon monoxide had likely accelerated my onset. My CAG number is 39, a “gray area” case, but my lived experience speaks volumes about how environment and biology can intertwine.
Standing before the researchers, scientists, and staff, I felt calm and connected. These were people who dedicate their lives to understanding and healing. I spoke about the systemic barriers that delayed my diagnosis — how, as a Black woman, I faced disbelief from medical professionals who told me, “Black people don’t get Huntington’s disease.” The room grew silent, not from politeness, but from genuine engagement. They listened with open hearts as I shared what it’s like to live in the overlap between data and humanity, science and story.
When my talk ended, something extraordinary happened. A few people approached me quietly, their eyes filled with emotion. One by one, they hugged me, some with tears streaming down their face. In those brief embraces, I could feel the impact of our shared humanity. They weren’t just thanking me for speaking; they were thanking me for reminding them why they do what they do. Those moments said more than words ever could.
The quiet heroes of HD research
Afterward came one of the most unforgettable parts of the day: a tour of Wave’s laboratory. They handed me a lab coat and safety goggles, and I couldn’t help but laugh. It felt surreal to walk through the place where science meets hope. In every room, I saw quiet heroes at work — scientists refining experiments, analyzing data, and pushing the boundaries of what’s possible.
Everywhere we went, people smiled and waved. One scientist enthusiastically described a project he was leading; another showed me an instrument that measures molecules at an almost invisible scale. Their excitement was contagious. The lab didn’t feel sterile or distant — it felt alive. In that space, I realized that science, at its core, is an act of love: a belief in humanity’s ability to heal itself through curiosity and care.
Before this visit, I often imagined researchers as distant figures, names on journal articles or presenters in webinars. But meeting the Wave team changed that completely. These people are HD warriors, too. They might not speak at awareness walks or attend support groups, but their fingerprints are on every breakthrough we celebrate. They are the unseen hands transforming uncertainty into possibility, and their dedication gives our community something priceless: hope.
When I left, my heart was full. The Wave team didn’t just welcome me; they embraced me as part of something larger. In their eyes, I saw focus. In their voices, I heard compassion. And in their questions, I felt the same fire that fuels every HD advocate: the determination to make life better for those living with this disease.
As I boarded my flight home, I thought about how far I’ve come from fighting to be believed to standing before scientists who not only believe me but are working tirelessly to change the future of HD. That is progress. That is community. That is hope in action.
To the entire Wave Life Sciences team: Thank you for your warmth, curiosity, and commitment. You are the angels behind the scenes, the quiet warriors of the HD world. We are eternally grateful for all of you.
Together, we share the same mission: to make HD not just treatable, but someday, history.
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.
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