What Cuban food taught my wife about rare disease research

Rare Disease Week at the end of February reminded me of the time when my wife, Jill, attended a rare disease advocacy panel several years ago. When she arrived home afterward, she was visibly frustrated.

As someone diagnosed with Huntington’s disease and as a fierce advocate not only for Huntington’s, but for all rare disease communities, Jill has attended events where patients and advocates share stories and strategies. This time, though, what she shared stayed with me deeply.

Jill told me about a young woman on the panel, a college student discussing her uncertain future. This young person was considering going into research, inspired by a desire to better understand and maybe one day cure the disease affecting her family. But then a friend warned her against pursuing research directly related to her disease. The advice was blunt: She was “too close” to it to be an unbiased observer, implying that her personal connection would somehow make her less effective as a scientist.

That statement struck a nerve with Jill. And she told me a story that night that has stuck with me ever since.

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Early in our relationship, Jill told me she made it her mission to learn from my mother how to cook some of my favorite Cuban meals. I thought it was sweet, but when Jill described the dishes — bistec de palomilla and ropa vieja — I teased that those were “simple meals,” meaning they didn’t require a lot of ingredients.

Jill laughed off my comment at the time. She reminded me that simple on the surface doesn’t mean simple to master. Cooking, she explained, is a lot like research. You can open a book and follow a recipe or protocol step-by-step, and you’ll get closer to the same dish or result each time, but it won’t ever taste exactly the same.

But, she added, and here’s the important part, the difference lies in the small things, like the temperature of the pan, the timing, and the subtle variations that only someone intimately familiar can understand.

Jill went on to say that just because someone is close to a subject doesn’t mean they are biased. In fact, that closeness can bring insights others might miss. Just as a chef who knows a dish intimately can sense exactly what flavors it needs, a researcher with direct experience has a valuable perspective that can guide their work.

Jill’s passion for advocacy and research isn’t just personal; it’s deeply practical. Her journey with Huntington’s disease has made her determined to be part of the solution, not only hoping for better treatments but also contributing to the knowledge that makes those treatments possible.

Her story, like her cooking, is a reminder that small, precise actions matter. Whether it’s a pinch of spice or a test sample in a lab, the accumulation of those details shapes outcomes.

So, to any young person wondering if they truly belong in the research world because of their connection to a disease, Jill would say, “Yes, you belong. Your lived experience is a strength, not a bias.”

And to everyone in our rare disease communities, remember that a deep understanding of your disease gives you unique power. Advocacy and research are like cooking; they require passion, patience, and practice.

As for me, I’m grateful to be part of Jill’s journey and to share moments where cooking and life philosophies come together — especially when a meal includes bistec de palomilla, lovingly prepared by someone who knows the recipe well.

And now, if you’ll excuse me, all this talk about food has made me hungry. Who’s ready for a great Cuban meal?

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.