Remembering Roy Nierenberg, a pillar of the HD community
A columnist pays tribute to her friend, who radiated warmth and kindness
The Huntington’s disease (HD) community is a family bound together by shared experiences, mutual understanding, and unbreakable ties of support. Within this family, certain individuals shine in ways that leave an indelible mark on our hearts.
My dear friend Roy Nierenberg was one of those bright lights — an extraordinary presence who radiated warmth, wisdom, and kindness. His recent passing on Jan. 24 has left a void in our community, but his spirit will continue to inspire me as I move forward in my advocacy work.
I met Roy, who was born in New York and lived in California, through a virtual HD support group and an HD book club. From the moment he introduced himself, he made an impression I’d never forget. Holding up a copy of my memoir, “We Exist,” he beamed with enthusiasm and offered the most thoughtful feedback. It was a surreal moment that instantly created a bond between us. As we continued to engage in conversations, I realized that Roy wasn’t just a fellow advocate; he was a kindred spirit.
One of the first things he pointed out was that we shared the same CAG number, a numerical representation of the genetic mutation that determines the course of HD. In the world of HD, where numbers carry so much weight, this connection felt significant. But beyond genetics, we shared something even more meaningful: a deep passion for health and wellness. Roy was a true health-conscious foodie, and it became a running theme in our Zoom meetings that he always had something nourishing in front of him. Whether it was a beautifully plated salad or a homemade smoothie, he reminded us that even in the face of HD, we could still make choices to nourish our bodies and spirits.
A light that will never fade
Roy’s presence was a gift. He had an energy that was infectious — always smiling, always bringing a sense of optimism to our discussions. His insights were never just words; they carried depth, wisdom, and sincerity. He listened with intention, responded with thoughtfulness, and made everyone feel seen and heard. His love for singing in a choir was something he spoke about with great pride, and I can imagine the joy that must have radiated from him as he lifted his voice in harmony.
Beyond his personal passions, Roy was immensely proud of his family and his Jewish faith. He often spoke about them with love and reverence, and it was clear how much they meant to him. His connection to the HD community was unwavering, informed, and engaged, and he was always striving to contribute. He embodied what it means to live fully, despite the challenges life may bring.
When I received the news that Roy had gained his wings, I felt a profound sadness, yet I also knew that his spirit would live on in all of us who had the privilege of knowing him. I said a prayer, honoring the friendship we had built, and attended a virtual memorial hosted by the book club. Seeing others come together to celebrate his life was a testament to the kind of person he was — someone who made a lasting impact on so many.
Roy taught me a great deal, not just about HD, but about life itself. He lived with optimism and grace, embracing each day with purpose. His example is one I will carry forward in my own journey, as I continue advocating for the HD community. Every time I speak out, every time I support another person navigating this disease, I will do so with Roy in my heart.
I will remember his smile, his wisdom, and his unwavering positivity. I will honor his love for health and wellness by continuing to share the importance of nourishment, both physically and emotionally. I will carry his love for connection, ensuring that no one in this community feels alone. And above all, I will strive to live as he did — with an open heart, with strength, and with an enduring commitment to making a difference.
Rest in peace, my dear friend. Your presence may no longer grace our Zoom calls, but your light will never fade. You will forever be in my heart, guiding me as I continue this work. Thank you for your friendship, your wisdom, and your unwavering spirit. Your legacy lives on.
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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