On October 10, Tampa Palms resident Frank Skoviera had an idea. As a two-year volunteer communications director for the Facial Pain Research Foundation (located in Gainesville, FL), he had heard from thousands of people across the country suffering from a condition called trigeminal neuralgia, a debilitating pain that is caused by irritation of the trigeminal nerve, which carries sensation from the face to the brain. People struggling with trigeminal neuralgia can experience severe pain while chewing, speaking, or brushing their teeth.
Frank’s idea was to visit as many people as possible across the country to hear their stories in person, while also educating people about the condition and raising financial support for the foundation.
Ten days later, on October 20, Frank and his dog, Max, set off on their journey in Frank’s SUV, which he had wrapped with marketing messages to support the cause.
Over the next 53 days, Frank and Max trekked across the country, meeting with people, driving through a total of 37 states on a journey of 12,400 miles.
Frank’s role with the Facial Pain Research Foundation is not only one of service. He is a passionate advocate for people who suffer from trigeminal neuralgia because he also is a patient.
Frank’s Pain
“I’ve had chronic pain for the past 15 years,” Frank says. “At first, I spent months going to different types of doctors and dentists and an array of professionals, while the pain was getting worse, more frequent and spreading.”
Meanwhile, he was also trying to balance his career as a project manager at IBM with taking care of his family, and says the only word he can think of to describe that first year was “hellacious.”
Frank says the medical community has categorized this disease as a “suicide disease” and as, “the worst pain known to mankind.” It is often misdiagnosed and mistreated by professionals in both the medical and dental fields, who often mistake trigeminal neuralgia as a toothache. Frank says many patients have had root canals and teeth pulled, only to find the pain had worsened afterwards.
“I know how difficult it is and how it affects patients and their families,” Frank says. “I know how lonely it can be.”
He explains he is often in too much pain to even speak to his wife. At the end of the day, when she comes home from work, his pain is often at its peak. It can be frustrating for him and many families like his.
“There isn’t an area of your life that goes untouched,” Frank says. “Everything that you formerly knew as normal is now changed. It’s truly horrific.”
Supporting The Foundation
Frank took a medical leave from his career at IBM, then subsequently retired. About two years ago, he began volunteering as the communications director of the Facial Pain Research Foundation, which is funding research across the country to find a cure for trigeminal neuralgia.
Trigeminal neuralgia is rare, estimated to affect just over 100,000 people in the U.S. It is caused by a blood vessel pressing on the trigeminal nerve as it exits the brain stem, which wears away the protective coating around the nerve. This can happen as a result of injury or a variety of factors.
On his nationwide trip, Frank met with some of the researchers who are working on the five projects currently being funded by the foundation, which include work being done at the University of Florida in Gainesville; Duke University in Durham, NC; Rutgers University in New Brunswick, NJ; and at the University of California at San Francisco.
“We’re making great progress,” says Frank. “The scientific team and consortium of researchers we have working on this is staggering. They are world-renowned pain research specialists, and they are hugely committed to finding a cure.”
Frank says his trip was completely self-funded and that, in addition to raising awareness, he also set a goal of raising $10,000 for the Facial Pain Research Foundation. He reports that he expects to exceed that amount by at least 30 percent, once all of the pledges have been received and the final tally is made.
“Every dollar that we raise comes from the private community,” Frank says. “All of our staff — from the people who write the thank you letters to our trustees — everyone is a volunteer. So, 98.2% of the money we raise goes to research. We only pay for stamps and for our post office box in Gainesville.”
The money that was raised on this trip will go directly to supporting the research. Frank says the foundation fully expects the research to lead to a cure for trigeminal neuralgia by 2020.
The hope of a cure is one of the things that inspired Frank to get out and talk to people across the nation, especially those who are suffering from this disease. “I know how much pain you’re in,” he says he told them. “Hang in there. Research is in play and we hope to have something to help you (soon).”
53 Days of Driving?
When Frank returned home on December 11, he had held 75 meetings spread out over 37 states. In addition to meeting trigeminal neuralgia researchers and patients, Frank’s son Aaron was instrumental in setting up meetings with statewide golf associations, where he could share his message of awareness with staff members, who then passed information on to their hundreds of thousands of members through newsletter articles.
In the short 10 days he planned his trip, Frank had his car wrapped with bright teal decals inviting people to learn more about his “Drive Away the Pain” campaign. Frank says his car caught the attention of passers-by in major cities, such as Chicago, Los Angeles, Atlanta, Philadelphia, and even New York City, where he says thousands of people noticed his car at the corner of 5th Avenue and 15th Street, with many stopping to see the car’s messages.
As Frank traveled, he invited the people he met with to write a message on a four-inch circular teal decal that he then applied to the car, in a sense carrying that person with him the rest of the journey.
Frank says he spent all day driving, often with two or three meetings throughout the day, then ended at a hotel room, where he mapped where he was going next, and arranging meetings with the people in those locations who had requested he visit them.
“The skills I had cultivated in my career as (an IBM) project manager were very useful in organizing this trip,” he says.
Frank says he was in pain throughout the trip, but that he’s, “too hard headed” to let that stop him. “I take a small amount of medication, which helps a bit,” he says. “I use massage therapy, breathing exercises, tai chi, soft music, anything that relaxes the central nervous system. I also use distraction therapy. I’m fortunate that my mind is busy and I stay busy with the foundation.”
He adds, “Reaching out to others with the condition is helpful, too, because it takes some of the focus off myself.”
To learn more about the Facial Pain Research Foundation, visit FacingFacialPain.org. To see pictures of Frank’s journey or learn more about his nationwide campaign, look for “Drive Away the Pain” on Facebook, Instagram, and Twitter.