By Matt Skoufalos
The novel coronavirus (COVID-19) pandemic put on hold nearly every segment of business and kind of activity in communities the world over. The virus has sickened millions of people and resulted in hundreds of thousands of deaths.
COVID-19 also forced those who have been fortunate enough to have been spared the infection to change the way they do most everything, from working to accessing essential services, to interacting with neighbors.
Especially for those in the health research space, the pandemic has meant finding ways to continue to perform studies vital to the advancement of scientific understanding of a variety of ailments, including the rare neurological condition known as dystonia.
Dystonia is a movement disorder that causes involuntary and uncontrolled muscle spasms. It can force those afflicted with the condition into painful and abnormal contortions or movements. Dystonia sufferers are typically capable of normal cognition, sensory awareness and strength, but their speech can be impaired by the chronic disorder. It’s not fatal by itself, but prognoses are widely varied and difficult to anticipate; perhaps most cruelly, one-third of all patients are children.
Two of those patients are Tyler and Samantha, the son and daughter of Rick Staab, CEO of The Intermed Group of Alachua, Florida. Both Tyler and Samantha were born with dystonia, and have been affected by the disorder from young ages. Staab established the nonprofit Tyler’s Hope for a Dystonia Cure when his son was diagnosed with the condition in 2005.
In the years since the foundation was created, Tyler’s Hope has generated more than $35 million in funding for dystonia research and led collaboration among researchers at multiple universities around the world. Of every dollar raised by the charity, only 2 cents goes to defraying overhead costs. Rick Staab believes that’s the level of commitment that is required to discover a cure for dystonia in his lifetime – and that of his children.
“Finding a cure is like a needle in a haystack, but I’ve always been pretty lucky,” he said. “It could happen tomorrow, but I believe it’s going to happen in my lifetime, and I know it’s going to happen. We do high-risk, high-reward research, but most of the time it’s paid dividends.”
However, in the course of battling the pandemic, Tyler’s Hope has been forced to cancel its normal charity events. Although the foundation only hosts a few such events annually, they are critical to raising the funds necessary to sustain its operations and keep moving forward with vital research for a dystonia cure.
“When you don’t have income, you still have bills,” Staab said. “We have commitments for research grants that we as a board have decided to pay because we have tremendous momentum built up.”
“We’ve got to keep going until we cross that finish line,” he said. “We have so much opportunity to cure this relative to most other diseases and disorders that we face.”
One of the events to have been cancelled was Tyler’s Run for Hope, a 5K that typically draws participants from throughout the Gainesville, Florida metro area. With participants homebound amid concerns for their safety and limits on social gatherings intended to stifle the spread of COVID-19, the organization switched its plans to an ongoing, freestyle, virtual 5K in which participants can take part from across the country and the world.
“Through fiscal diligence, we have enough money to operate for a while and do some creative things virtually,” Staab said. “It’s just not as easy, but we have to do it.”
Craig and Mercedes Petrus participated in a virtual 5K to support Tyler’s Hope.
Since May, the virtual Run for Hope has garnered support from 127 participants and their families, having raised nearly $3,500 (and still going) with minimum contributions of $25 apiece. Everyone is invited to complete the 3.1-mile event in his or her own way. Some jogged, ran or walked; others rode stationary or road bikes. Some kayaked, and some even completed the distance on stand-up paddleboards.
“You name it, people participated in all different ways,” Staab said.
After they completed their distances, participants then sent along photographs for the charity to publish in solidarity. They were issued a pair of commemorative flip-flops as a thank-you for supporting the charity in these challenging times. For some, the run offered a welcome respite from stay-at-home orders and a chance to get some much-needed physical activity. It will continue through August 2020.
“It also puts the focus on health during a time when people weren’t really able to get out of the house,” Staab said. “I’ve heard from a number of people that said they were thankful that they’d done it. They had a sense of achievement just for participating.”
Importantly to the foundation, the virtual 5K also helped keep the focus on its efforts at a time when people’s attentions and finances are fragmented in any number of ways. Staab hopes it will help continue to keep Tyler’s Hope on their radar amid uncertainty surrounding its largest event, the Hope Weekend, a charity golf tournament held every October.
“Things are up in the air,” Staab said, noting that if the event can’t proceed as planned, not only does the charity miss out on its revenues, but the sponsorships and third-party donations that supported it as well. That’s why Tyler’s Hope is asking its regulars to pledge their contributions to the event months ahead of time to establish a floor for its revenues.
“We sell out, usually with the same people coming,” he said. “If we open things back up, all the events are going to happen around the same time. We’re asking them to get it in the budget so if things get crazy again, it’s not an afterthought.”
The Ocala Turtles Running Group supports Tyler’s Hope.
Tyler and Samantha are both working through their conditions with resolve and resilience, and their brother, Luke, remains symptom-free. Staab is hopeful that the grassroots momentum of Tyler’s Hope for a Dystonia Cure will enable every child suffering from the disorder to live a normal life.
“When you look at your kids or anybody else’s [with this ailment], you’ve got two choices,” he said. “One: do nothing and feel sorry for yourself, or two: do everything you can to change that.”
“We realize we aren’t the only ones hurting in this time, and if we do what we think is right, people will remember us on the other side,” Staab said. “Every day we make even more progress and more promise. The more we do, the faster that speeds up.”
For more information, and to donate, visit TylersHope.org.