Zahydie Burgos Ribot & Francisco “Pako” Ribot

Zahydie is a licensed psychologist, advocate, and caregiver to her husband, Pako, who was diagnosed with Young-Onset Familial Alzheimer’s Disease at just 46 years old. They are based in Orlando, Florida.

Zahydie Burgos Ribot’s life is defined by love, resilience, and an unwavering fight for dignity in the face of a devastating illness. Every day, she stands beside her husband, Francisco – known lovingly as Pako – as he confronts the relentless progression of Young Onset Familial Alzheimer’s Disease. Their journey is not one they ever expected, but it has become one they walk together, hand in hand, with courage and heart. 

Pako, at just 46, was diagnosed with Young Onset Familial Alzheimer’s Disease, a rare and genetically inherited condition that had already taken his father, grandfather, great-grandmother, and several uncles, aunts, and cousins. The symptoms had crept in quietly, subtle changes in personality, lapses in memory, unexpected mood swings. For over a year, Zahydie, a licensed psychologist, searched for answers, attributing the changes to stress or mental health struggles. When the neurologist showed her Pako’s MRI and gently told her to “think like a clinician,” the weight of their new reality began to settle in. 

That moment marked the beginning of her life as a caregiver. 

As the disease progressed, Zahydie did what so many caregivers do: she pivoted. She adjusted her work, rearranged her priorities, and began advocating for Pako in every space imaginable, including the world of clinical research. One of the few available lifelines has been Pako’s participation in an HHS-funded clinical trial involving treatments like E2814 therapy and Leqembi, a medication that helps manage his symptoms and preserves some quality of life. These treatments allow them, incredibly, to live with intention, checking off bucket list items, creating joyful moments, and defying the typical narrative of early-onset Alzheimer’s. 

But now, that lifeline is fraying. Recent cuts to the Department of Health and Human Services have eliminated critical caregiver support programs and put the future of clinical trials like Pako’s in jeopardy. With funding pulled, Zahydie fears Pako will lose access to the very medications that have helped slow the disease’s relentless progression. 

The blow is not just bureaucratic. It’s deeply personal. 

Zahydie and Pako’s advocacy is not born out of politics, it is born out of love. Their fight is not abstract. It is daily, intimate, and deeply human. In every call, in every petition, in every tear shed, they remind us all that behind every budget line item are real people. People like Pako, who still loves music. Who still smiles when he sees his wife. Who still matters. 

While we support eliminating waste and increasing efficiency, these decisions should not be made haphazardly. We call on decisionmakers to pause cuts, restore funding, and make future budget decisions with careful consideration that takes families like Zahydie and Pako into account.