Over a memorable span of just five years, Jon and Nancy Wilkins experienced many of life’s most wonderful and tragic moments. Jon and Nancy turned their own personal tragedy into hopeful triumph for future patients and families by establishing the Dr. Jon & Nancy McEwan Wilkins Fellowship for ALS Research Fund.
As a soon-to-be-retired dentist of more than 40 years, Jon Wilkins, D.D.S., M.S.D., met Nancy McEwan on a blind date in January 2015 through a lifelong friend in Winter Park, Florida. Both having lived through the sorrow of losing their first spouses, they were married in November of that same year, which became a “match made in heaven,” Jon said.
Less than a year later, in September 2016, Nancy began having symptoms of a neurological disorder. Based on her initial symptom — an ever-so-slight change in her voice — they feared that she could possibly be suffering from amyotrophic lateral sclerosis, or ALS. This fatal, progressive disease attacks critical neurological and musculoskeletal functions, ultimately destroying the patient’s ability to breath.
Their journey involved evaluation by numerous physicians, neurologists and health care centers in Orlando, Jacksonville and Rochester, Minnesota, in search of a definitive diagnosis and curative treatment. After an exhaustive 18-month search for answers, Mayo Clinic in Jacksonville definitively diagnosed Nancy with ALS. Her specific diagnosis was bulbar ALS, which begins in the vocal cords, then progresses to compromised breathing, swallowing and limb movement.
While the devastating diagnosis confirmed what they most feared, Nancy and Jon refused to give up hope. They requested a second opinion, and that referral came from an unexpected source.
“Nancy’s ineffable goodness, love and generosity resulted in her having many devoted and loyal friends. She was an especially beloved member of a women’s club in nearby Orlando,” Jon said.
After sharing the tragic news with her closest friends, one replied that her late husband was treated for his Parkinson’s disease for over two years at the UF Health department of neurology.
With that information, Nancy and Jon immediately emailed the doctor, Michael Okun, M.D., chair of the UF department of neurology and executive director of the Norman Fixel Institute for Neurological Diseases at UF Health. By 5 p.m. that same Thursday, they received a response.
Both James Wymer, M.D., Ph.D., a neurologist and professor in the department of neurology; and Emily Plowman, Ph.D., CCC-SLP, an associate professor in the department of speech, language and hearing sciences at the UF College of Public Health and Health Professions, work specifically with ALS patients. Dr. Wymer’s office scheduled Nancy for an appointment the following Monday. After meeting Dr. Wymer, they knew their search for quality, compassionate care was realized, especially with Nancy sensing his genuine concern for her.
Renewed Hope
“Jim Wymer was very compassionate and proactive from the moment we met him,” Jon said. “He was completely focused on what he could do to help Nancy battle her ALS.”
With Nancy’s diagnosis occurring 18 months after her initial symptoms, Dr. Wymer knew that time was of the essence in terms of establishing therapeutic treatments. He asked his colleague, Dr. Plowman, if she could immediately evaluate Nancy in her clinic. Jon and Nancy were interested in enrolling Nancy in a clinical trial, but Nancy’s age and other exclusions prevented her from being accepted. However, Dr. Plowman suggested that Nancy begin working with her research team members in the Aerodigestive Research Core.
“Given the progression of her disease by the time she came to us, I felt that it was more important to start the breathing therapy with her immediately versus enroll her in my clinical trial that would have included a two-month ‘lead-in’ period to benchmark the natural ALS breathing decline,” Dr. Plowman said.
The goal was to strengthen Nancy’s muscles that supported her breathing in order to mitigate the progressive nature of ALS. Just six weeks later, Nancy showed incredible improvement, which greatly enhanced her sense of hope.
Over the next 18 months, Nancy and Jon kept regular appointments for Nancy’s respiratory therapy. They also engaged with the ALS community by attending conferences and evaluating possible clinical trials to learn what basic research was discovering and what breakthroughs might be on the horizon. At one of these conferences, Dr. Wymer revealed to Jon that financial support through private philanthropy was a critical factor in initiating ALS research and expanding clinical care.
Tragically, less than two years after confirmation of her diagnosis, and a little over three and a half after her initial symptoms, Nancy passed away on March 9, 2020, just at the beginning of the Covid-19 pandemic.
Before her death, Jon and Nancy discussed giving back to UF Health because of how Drs. Wymer and Plowman so significantly impacted Nancy’s quality of life with proactive and compassionate care. This involved establishing a fellowship to support more ALS-specific respiratory and speech therapists who could participate in research as well as patient care.
“It’s very important to me that that these kinds of clinical treatments are available to those who so desperately need them,” Jon said.
By the spring of 2019, Nancy had already lost her ability to speak. More determined than ever, she and Jon worked quickly to establish the Dr. Jon & Nancy McEwan Wilkins Fellowship for ALS Research Fund, which occurred in November 2019.
An Enduring Legacy
Fortunately — and perhaps fatefully — Dr. Wymer already had a potential fellow in mind. Mackenzi Coker is a speech therapist who has worked with pediatric patients in Tampa. She and Dr. Wymer had become acquainted through a mutual connection: Mackenzi’s father, Phil.
Phil Coker was diagnosed with ALS in March 2019, and then became a patient at UF Health later that year, which overlapped with Nancy Wilkins’ treatment at UF Health. Mackenzi had experienced firsthand how debilitating this horrific disease could be and wanted to learn as much as possible in order to help her father and other ALS patients.
“It’s just a tragic diagnosis for everyone,” Mackenzi said. “ALS affects everybody in the family.” Mackenzi’s mother, also named Nancy, and her sister, Tricia, were devastated by Phil’s diagnosis. They wanted to be as proactive as possible, and while they understood the eventual outcome, they focused on how to help and prolong his quality of life.
Mackenzi’s father learned that he carried the familial gene, called the C9 Gene, of ALS. Only five to 10 percent of ALS cases are genetic, which means 90 to 95 percent have a sporadic onset with no connection to family genetics.
Because of this, Mackenzi wanted to be tested for the ALS gene since there was a 50 percent chance she could carry the gene.
“It’s information. It’s knowledge, and knowledge is power. And that can help us if I’m confirmed to be a carrier,” Mackenzi said.
Fortunately, Mackenzi tested negative for the C9 Gene. Armed with this knowledge, she and her family turned their focus to their father’s treatment.
They met with Dr. Plowman, with whom Mackenzi shared an immediate connection, especially since they both were speech therapists. During this time period, Dr. Wymer would occasionally mention needing another therapist. Finally, the opportunity presented itself, thanks to Jon and Nancy’s generosity.
“I was so invested in what my dad was going through and wanting to help more with him and the ALS population in general,” Mackenzi said. “I knew this was an opportunity I could not turn down. It was all very kismet to me.”
Tragically, Mackenzi’s father passed away at the time of publishing. He was surrounded by his entire family and shared his final moments peacefully.
Goodness, Fate and a Hopeful Future
In addition to adding Mackenzi as a speech therapy fellow, the Wilkins’ gift has provided Drs. Wymer and Plowman with the seed money to expand their basic science research efforts. Most recently, they were awarded a multimillion dollar biomarker research grant to supplement the Wilkins’ fellowship.
Through the Wilkins’ gift, and with these extraordinary sets of circumstances, there is the potential to generate an incredible impact on the lives of ALS patients. Although Mackenzi has only been at UF Health a few months, she is already helping patients receive expert care, bringing them renewed hope.
“These patients are going through something horrible,” Mackenzi said. “It’s beyond difficult. But when that patient comes in laughing and joking and smiling, just talking about their day and their future plans, that’s what makes me so happy, to share those moments with them.”
In a world that so often celebrates six degrees of separation, the inexplicable yet intrinsic links between the Wilkinses and the Cokers may generate new breakthroughs for future ALS patients. The generosity of Jon and Nancy Wilkins, coupled with the dedication and expertise provided by Drs. Wymer, Plowman and Mackenzi Coker give new meaning to the definition of goodness and fate.
You can support ALS research at UF Health
For more information about supporting the Dr. Jon and Nancy McEwan Wilkins Fellowship for ALS Research Fund or the Norman Fixel Institute for Neurological Diseases at UF Health, please contact Stephen Figueroa, M.S., Senior Director of Development at sfig@ufl.edu or 352-273-5882.