Medical Research Affects Real Lives
Sadie’s Story
“WITHOUT RESEARCH, PKU WOULD HAVE HELD ME HOSTAGE.”
— SADIE, TEXAS
For this family, the importance of medical research was abstract — until it became personal. When their daughter Sadie was born, newborn screening revealed she had phenylketonuria (PKU), a rare metabolic disorder that prevents the body from breaking down protein. Without treatment, PKU can lead to severe cognitive impairments.
But decades of medical research changed Sadie’s life. Because her condition was detected early, she began a highly restricted diet of only three to four grams of protein per day, supplemented by a specialized metabolic formula developed through years of scientific advances.
Today, Sadie is thriving. She’s a straight-A student, active in the National Junior Honor Society, and involved in multiple academic clubs. Her journey is proof that sustained investment in research delivers life-changing results.
Her family’s message is this: “Because of research, Sadie has the chance to reach her full potential. Every child deserves that chance—that’s why continued investment in cures is so vital.”
Zahydie & Pako’s Story
“BEHIND EVERY BUDGET BATTLE IS A FAMILY LIKE OURS.”
— ZAHYDIE AND FRANCISCO, FLORIDA
For Zahydie, life is defined by love, resilience, and an unwavering fight for dignity. Every day she stands beside her husband, Francisco — known as Pako — as he confronts Young-Onset Familial Alzheimer’s Disease.
At just 46, Pako was diagnosed with the rare, inherited condition that has already taken his father, grandfather, great-grandmother, and several relatives. Symptoms began subtly: lapses in memory, mood swings, changes in personality. As a licensed psychologist, Zahydie searched for answers, until an MRI confirmed the devastating truth.
Zahydie rearranged her career and priorities to fight for Pako, advocating fiercely in the research community. Clinical trials offered lifelines, slowing progression and allowing them to live with intention, checking off bucket-list items and creating joyful memories.
But those lifelines are now at risk. Recent federal budget cuts eliminated critical caregiver support programs and jeopardized the very trials that are keeping Pako stable. Zahydie fears he will lose access to the medications helping preserve his quality of life.
For Zahydie, this isn’t politics—it’s personal: “Behind every budget decision are real people like Pako. People who still matter. Lawmakers must remember: when you cut research, you cut lives.”
Dawn’s Story
“WITHOUT THIS TREATMENT, I DON’T KNOW IF I’D BE
HERE TODAY.”
— DAWN, IOWA
Eight years ago, Dawn’s life was upended. What started as a routine lumpectomy revealed she had Atypical Lobular Hyperplasia — putting her at high risk for breast cancer. The news hit like a freight train.
Living in rural Iowa made everything harder. Her small-town hospital lacked the advanced care she needed, so her family rearranged their lives — long drives, endless tests, and missed work became their new normal.
That sacrifice paid off. Dawn qualified for tamoxifen, a “cancer prevention” drug that slashed her risk of developing breast cancer. She took it faithfully for five years. Today, she’s still cancer-free.
But Dawn knows her story could have gone another way.“If I hadn’t had access to this treatment, I don’t know if I’d be alive. And the thought that research funding could be cut — that future patients might not get the same chance — is terrifying.”
Her message to lawmakers is blunt: “When you stop research, you put so many lives on the line. In America—where we lead the world in science and innovation—how can we ever accept that?”
Ernie’s Story
“ALZHEIMER’S DOESN’T WAIT. NEITHER CAN CURES.”
— ERNIE, NORTH CAROLINA
In October 2023, Ernie received news that would forever alter his life. After undergoing sleep studies at Duke University, doctors suspected something more than simple sleep problems. Tests confirmed what he feared: it was Alzheimer’s disease.
At first, there was hope. His doctor recommended an experimental treatment in testing that could slow the disease’s progress. With cautious optimism, Ernie enrolled. But just a week before he was to begin, his doctor called with devastating news: due to a genetic abnormality, Ernie no longer qualified. The chance was gone.
Now, on daily approved medications, Ernie holds onto hope that new research will bring new treatments — something to delay the inevitable. But the reality is unrelenting: he is acutely aware of his own decline, and the fate he faces.
Ernie pushes forward despite his diagnosis. He works part-time, walks the trails near his home with his four dogs, and cherishes time with his wife, three grown children, and grandchildren. Their support keeps him grounded, even as the disease advances.