Resilience and Research: The Edwards Family’s Gift to Parkinson’s Science

When Sandra Edwards of Oak Ridge, Tennessee, was diagnosed with early-onset Parkinson’s disease in her late 30s, it marked the beginning of a decades-long journey that has inspired a powerful legacy: a gift to support neurodegenerative disease research at Northwestern University Feinberg School of Medicine.

Sandra Edwards passed away in 2022 at the age of 79. Her husband, Robert, has made it his mission to continue her quest to slow, and perhaps even stop, the progression of the disease. The family turned
to Parkinson's disease scientists at Northwestern, where their daughter, Laura Edwards ’85, PhD, earned her bachelor’s degree. The Edwards family has made generous gifts to support research by D. James Surmeier, PhD, Tanya Simuni, MD, Paulina Gonzalez-Latapi, MD, and David Gate, PhD.

“As [Sandra] had training as a microbiologist, she had a keen interest in trying to learn all she could about the disease to see if there was some secret she could help unlock,” Robert Edwards said of his late wife. “I’ve determined, as has Dr. Surmeier and many of his colleagues, that solving the mystery lies in understanding Parkinson's disease in its earliest stages.”

Parkinson’s is the second-most common neurodegenerative disease after Alzheimer’s disease, according to the Parkinson’s Foundation. Nearly 90,000 people in the U.S. are diagnosed with the disease each year.

Adding to the Edwards’ sense of urgency, federal funding freezes have threatened to upend vital research and clinical trials that are advancing scientists’ understanding of the disease.

“When the news came that many government grants were being suspended, I became immediately concerned that the type of work Dr. Surmeier is engaged in would result in a great loss if interrupted, as continuity is a key aspect to much of what he is doing,” Robert Edwards said. As a direct result, he increased his support for Dr. Surmeier’s work.

Dr. Surmeier, chair of the Department of Neuroscience and the Nathan Smith Davis Professor of Neuroscience, investigates why certain brain cells—dopaminergic neurons in the substantia nigra—are especially vulnerable in Parkinson’s disease. Two main theories exist: one blames energy stress and mitochondrial failure, while the other points to toxic buildup of misfolded proteins like alpha-synuclein.

His lab’s research suggests these two problems are linked. The team has found that calcium entering neurons—brain cells—through Cav1 channels not only stresses mitochondria, which generate energy for the cells, but also boosts the uptake of proteins from outside the cells, potentially including harmful alpha-synuclein. They also discovered that certain molecules on the cell surface, like heparan sulfate, may enhance this uptake.

Dr. Surmeier’s research aims to tackle what occurs during the prodromal, or pre-diagnosis, phase. Typically, by the time of diagnosis, about 75% of the essential dopamine-producing cells have already died.

“If we want to solve the Parkinson's disease puzzle, we need to do it before the horse has left the barn—which means before the time of diagnosis, before movement problems occur,” Robert Edwards said.

A Landmark Study

Paulina Gonzalez-Latapi, MD, is advancing Parkinson’s disease research thanks to philanthropic support from the Edwards family. Her projects use data from the Parkinson’s Progression Markers Initiative (PPMI), a landmark, international effort to identify biomarkers for the progression of Parkinson’s disease for use in clinical trials for novel therapies. Northwestern is one of 50 international sites participating in the study.

Dr. Gonzalez-Latapi’s first project focuses on individuals with early-stage, sporadic Parkinson’s disease who demonstrate hallmark alpha-synuclein pathology. Hers is the first long-term study tracking biomarker changes in this group, aiming to define how the disease progresses biologically. The findings are directly relevant to developing targeted therapies and have already been presented at a major scientific conference.

Her lab’s second project investigates people who carry a mutation in the GBA gene—the most common genetic risk factor for Parkinson’s—but who have not yet developed symptoms. Since most GBA carriers never manifest the disease, the goal is to identify biomarkers that can predict who is at highest risk of progression. Together, Dr. Gonzalez-Latapi’s studies aim to improve early detection and enable more precise, personalized approaches to treating and preventing Parkinson’s disease.

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The Edwards family also supports other Parkinson's disease-related research at Northwestern. Dr. Simuni, director of the Parkinson’s Disease and Movement Disorders Center, and Dr. Gonzalez-Latapi, an assistant professor in the Ken and Ruth Davee Department of Neurology, are developing a staging protocol for Parkinson's disease based on recently discovered biomarkers. This protocol will facilitate selection of participants for clinical trials and later guide the use of precision therapies.

A third effort funded by the family is directed to Dr. Gate’s research via a grant made through the Michael J. Fox Foundation for Parkinson’s Research. Dr. Gate’s research investigates the involvement of the immune system in Parkinson's disease, with a focus on the brain’s hypothalamus.

Sandra’s Resolve

Sandra Edwards’s diagnosis came after years of experiencing subtle but troubling symptoms—diminished handwriting and a loss of taste and smell. After inconclusive consultations with local doctors, a visit to her sister in New Hampshire led to a diagnosis from a Dartmouth researcher: early-onset Parkinson’s disease.

About 10 to 20 percent of people with Parkinson's disease experience symptoms before age 50, according to the Michael J. Fox Foundation. This form of the illness progresses slowly, often spanning decades, and Sandra lived with it for many years. Despite the challenges, she remained active, engaged, and optimistic, never losing her characteristic warmth and sunny disposition. Her resilience in the face of Parkinson’s, as well as earlier battles with polio and cancer, became a defining part of her legacy.

Sandra earned a degree in zoology as the top graduate in her class, later completing a master’s in microbiology while raising her daughter. She was a passionate advocate for women’s rights,
a leader in environmental causes, and a meticulous family historian who traced her roots across continents. Even as Parkinson’s gradually slowed her body, her spirit remained undimmed—her smile, her warmth, and her curiosity never fading.

As Sandra’s condition progressed, Robert became her devoted caregiver, picking up family and household responsibilities. Meanwhile, their daughter, Laura, went on to become a professor at Princeton University.

Now, the family, led by Robert and his sister-in-law Vicki Mayfield, is answering the call to support scientific progress—at the same time preserving Sandra’s memory and honoring her long battle with Parkinson's disease.

“This is an exciting time for Parkinson’s disease research, and the Edwards family is ensuring that we can maintain momentum in our search for a cure for this devastating disease,” Dr. Surmeier said.

For more information about Parkinson’s disease research, please contact Jordan Sund at jordan.sund@northwestern.edu or 312-503-2706.

This story was published in the September 2025 issue of The Philanthropist, a newsletter for supporters and friends of Northwestern University Feinberg School of Medicine. View our publications here.