Despite dwindling resources, hope endures among researchers

A couple months ago, my wife, Jill, and I were delighted to attend the wedding of one of our daughter’s closest college friends. Over the years, our daughter, Alexus — or Lexi, as we call her — has introduced us to some of the remarkable friends she made at the Massachusetts Institute of Technology (MIT).

For those unfamiliar, MIT is regarded as one of the most prestigious universities in the world, particularly in the fields of science, engineering, and research. With an acceptance rate that is astonishingly low — a mere 4.5% — MIT’s typical student is the kind of young person whose high school résumé resembles a blueprint for a rocket ship: full of invention, leadership, and curiosity. Students come from around the world and represent a wide range of identities, perspectives, and lived experiences, united by an extraordinary intellect and drive.

At the wedding, we reconnected with some of Lexi’s friends and met others for the first time. It reminded Jill, who is gene-positive for Huntington’s disease, and me how grateful we are that some of them are so passionate about changing the world through research.

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Many of Lexi’s friends chose to enter the field of research instead of easier or more lucrative paths. A job at Google or a Wall Street firm could easily land them a solid starting salary. Yet, many took positions as research scientists, sometimes earning much less. It’s still good money, but compared with other options, it’s undoubtedly a sacrifice.

So why give up the riches? To help shape clinical trials for rare diseases. To unravel how genes contribute to heart attacks and stroke. To understand how children with autism process the world.

What moved Jill the most wasn’t their credentials, though there was no shortage of qualifications. Rather, it was the way they dedicated their lives, sometimes quite literally, to work that most of us will never see but will one day need. As someone with Huntington’s, my wife knows firsthand the importance of original, creative, and passionate research. Every breakthrough in labs across the country offers a flicker of hope for families like ours.

‘We all rely on research’

When people question the role of diversity, equity, and inclusion in research settings, I understand the concern. No one should ever want to see someone promoted or hired solely to check a box. But in our experience, the reality isn’t that qualified candidates are being unfairly passed over. Rather, what we’ve seen — at that wedding and in every conversation since — is young (and yes, diverse!) researchers being told that the money isn’t there.

Identity isn’t what’s standing in their way; it’s funding and other resources, and the sometimes-fading societal will to back ideas that could, with enough nurturing, become tomorrow’s cures.

Jill and I will always defend everyone’s right to voice their concerns and maintain high standards. But what we witnessed at the wedding was an abundance of brilliance, drive, and heart — paired with a depressing lack of money. Promises made to these researchers regarding everything from rare disease trials to neural studies in autism were being scaled back or withdrawn.

I’d like to let Jill close with her own thoughts: “The truth isn’t that research jobs are being snatched from the most qualified by someone else who’s ‘diverse.’ There are enough important jobs for everyone willing to dedicate their lives to helping others. What Carlos and I heard that night were stories of resources that simply aren’t enough. Research is being cut, and these passionate people are making personal sacrifices because they believe in their work. They’re willing to do [their work] with less. They’re willing to take pay cuts to do whatever it takes to keep asking big questions,” Jill observed.

“For anyone who’s ever sat in a doctor’s office, held a hand through chemo, or prayed for healing, remember this: The real enemy isn’t inclusion or supporting people from all walks of life; it’s the shrinking support for the very people trying to heal us,” she added. “I hope everyone reading this will see what’s really happening in medical care and remember just how much we all rely on research.”

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.