My Partner Was In A Study For Dementia Patients. Then The Trump Administration Did The Unthinkable.

Steve and I found each other in midlife — both of us a bit weathered but willing, both ready for a second chance. Our bond was forged in trust and curiosity, and the outdoors was our refuge. We hiked, paddled and talked… about everything. Anything. I was magnetically drawn to the way his brilliant mind searched for answers, pulling me deeper into the mysteries of the world around us.

The day he knelt beside a shrinking puddle after a storm and guided tadpoles into deeper water — even as the sun pressed down, drying everything around us and threatening to erase them — was the day I knew I loved him.

“Maybe something will happen to save them,” he said.

That was my Steve — quiet hope, steady heart, believing that good might still win, even against great odds.

His mind was all precision and wonder, drawn to patterns and the elegant logic of how things fit together. He didn’t just want to know — he needed to understand. Most of all, he believed in progress. He believed in science.

When things began to change, it was subtle at first — small lapses, challenges with word-finding, moments that didn’t quite add up. The beginning of the end came more slowly than you’d expect. And yet, somehow, it all happened too fast.

Steve’s fiercely inquisitive mind began to show signs of confusion — cognitive changes that were unsettling but difficult to define. Our search for answers stretched on for years — a reality that is true for most who travel this path. Dementia wasn’t even on the radar during those early days. He was in his 40s — vibrant, fit, full of life — and nothing about his physical health hinted at what was happening beneath the surface.

We saw doctor after doctor, checking off a long list of what it wasn’t. No one could tell us what it was. I don’t think the delay was only because of how medically complex his condition was — though it certainly was that. I believe part of it came from something more human: the deep reluctance to give a younger person a diagnosis as final as a terminal brain disease. Eventually, he was diagnosed with primary progressive aphasia, a rare neurodegenerative condition that initially affects language skills. It is a form of frontotemporal dementia, or FTD. It is also a death sentence.

FTD is the leading cause of dementia for those under age 60, and it is an indescribably cruel disease, decimating lives and often masquerading as something else completely. It can mimic psychiatric conditions like psychosis or even something as generic as depression and anxiety. There is no cure for it. No treatments.

While some forms of dementia have identifiable biomarkers that allow for a clear diagnosis in life, others, including FTD, often can only be confirmed after death. Biomarkers are like fingerprints, providing unique biological clues that help detect, diagnose and eventually treat these conditions.

But these fingerprints don’t reveal themselves on their own. They can only be discovered through rigorous, sustained research and by examining the brains of those who have lived with the disease.

Steve’s faith in science is what later drove us to go through the arduous process of enrolling in a study that was intended to conclude in brain donation. The end goal was clear: At the conclusion of his journey, Steve’s battle-worn brain — the one that conceived so many brilliant ideas over his lifetime and that also somehow even found a way to love me — would become a tool to help find a cure, a treatment, or perhaps aid in identifying those precious biomarkers. I would also receive a pathology report that would finally tell me specifically what had stolen his future and taken him from me.

Now, years later, as my Steve is dying, I am trying to find understanding whenever and wherever I can for the sake of my mental health — especially related to the never-ending stream of news flowing out of Washington, D.C. So, when I heard reports that funding would be pulled for studies connected to the National Institutes of Health, I knew the call was coming.

Funding has been pulled for the study Steve has participated in for years. Even more shocking, financial support was pulled for an entire family of studies conducted at the top-tier academic medical institution that was following his case.

I know the head of the study — she and I have been in this together for so long. She even helped to coordinate Steve’s final arrangements with the funeral home, which was a necessary step to iron out early in the process. The choreography of brain donation is precise, time-sensitive, and cannot be left to a last-minute decision — every minute matters — so she helped however she could to make sure everything was just right.

Deciding to go through with these arrangements — even when it’s your choice and your reasons for doing it are solid and sound — is an incredibly difficult thing to process. This researcher was there for all of that. She knew how emotional it was for me, especially back then, when Steve was still walking and talking. Back then…

She did not want to deliver the news of the funding cuts and the termination of the study to me. I know that. But at that moment, mainly because I had half-expected that the call would come, I was able to step back and imagine how this must be affecting her, both personally and professionally. I asked her, “Are you OK?”

She told me her entire department was shutting down this week and that this would not just eliminate jobs, which is awful enough, but would wipe out years of expertise, collaboration and critical momentum in brain disease research. The loss extends beyond individuals — it erases the foundation for future breakthroughs. The funding for dementia studies is disappearing, and the idea of being further from a treatment, a cure, and identifying biomarkers for Steve’s disease and others — it’s inconceivable. It feels… sinful.

We talked through the complexities of whether starting any of these studies back up was a possibility at some point if, by some miracle, the funding was to return, but there are too many factors. The truth is, years of work in innumerable areas are just… gone. Poof.

I thought it was incredibly brave of her to talk to me — and even braver to hold her own feelings at bay in order to maintain her professionalism. Her job is being taken from her, after all. Her life’s work and that of her colleagues is being erased.

As hard as it was for her to call me, I can’t begin to imagine the heartbreak behind the other calls she had to make — each one a reminder of promises broken by forces beyond her control. Her team’s research extended beyond dementia and included studies on brain disorders affecting children. She was forced to call the parents of a 2-year-old. A 5-year-old. A 6-year-old — and a multitude of others. These children were part of studies designed to help them live, and in several cases, the experimental treatments were working.

The parents of these children had scheduled their sons’ and daughters’ next treatments, believing in the possibility of more birthdays, more bedtime stories, more moments of laughter. Now, many of them will be scheduling goodbyes, because the hope that’s potentially keeping their children alive has been cruelly yanked away.

We’ve been made to believe that science and medicine will always march forward — that cures are just a matter of time and effort — but progress is not promised. Choices must be made to support this work. These researchers. These families. My family… my Steve.

Inexplicably, those in power made the unthinkable choice to gut funding, dismantle research and extinguish hope rather than continue advancement toward cures. They have made the unforgivable choice to abandon progress, forsake science and turn their backs on the very people whose lives depended on this research — and so many others who will need it in the future.

This is not just our story. It is the story shared by every family that will ever benefit from research on brain disease and a whole slew of others — from pediatric cancer to heart disease and beyond. And why? For what? Cutting funding for essential research isn’t fiscal responsibility — it’s academic and medical self-sabotage.

Our leaders are callously dismantling the very systems that once made America a beacon of innovation and discovery — and compassion. Pulling critical funding for research is a deliberate and cruel choice, a betrayal by those who are supposed to represent us, protect us and lift us up as a society. Steve’s quiet faith — that somehow, even against the odds, good would prevail — now feels as fragile and forsaken as those tadpoles drying in the sun.

Disease does not recognize party lines. It does not discriminate by zip code, gender, color or belief. It does not care who you love… or who you choose to hate. It does not care about your bank account or what’s in it. It will touch every family, in one way or another. It will touch yours, too, no matter who you are.

If we fail to demand accountability, we risk losing not only progress, but a piece of our collective soul. And if we don’t open our eyes to what’s being taken from us, we won’t just fall behind — we’ll forget who we are.

Dyan Sheridyn is a writer with a background in radio, communications and advertising with experience in both corporate and creative agency environments. She also works as a freelance voiceover artist. For nearly 20 years, she has shared a life of deep love, laughter and partnership with Steve, whose diagnosis of frontotemporal dementia (FTD) reshaped their world and turned advocacy into a calling. She is currently channeling that passion into developing a podcast and is exploring new ways to raise her voice, share her story and support fellow care partners through connection and community.

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