It started with a conversation.
Kelly Shad Guillou and her daughter, Clementine, were at UF Health for a check-up with Jennifer L. Miller, M.D., a professor in the University of Florida College of Medicine’s division of pediatric endocrinology. Living with Prader-Willi Syndrome (PWS), Clementine depends on Miller’s expert care.
During the appointment, Guillou asked Miller about PWS research.
“The question came up: ‘How can the necessary funding be obtained? How can Dr. Miller’s research ideas be supported?’” Guillou said. “Much lies undiscovered because of the perpetual lack of research funding.”
And so, Running for Research was formed.
Running for Research is a fundraising program dedicated to bringing awareness and support to research focused on this rare genetic disorder. PWS is often associated with lethargy, low muscle tone, unsatisfied hunger, weight gain and intellectual disability.
Because of dedicated fundraisers like Guillou and leadership, Running for Research has used competitive races ranging from 5K to marathon length to amplify its message while raising more than $830,000 for UF PWS research since 2019.
“When we started, our group consisted mainly of a small handful of PWS families that believed in Dr. Miller and her groundbreaking research,” Guillou said. “We built our support base and visibility by relying on our team members and donors to spread the word.”
Guillou attributed Running for Research’s growth and success to Miller.
Miller‘s commitment to PWS research is evident. She has produced over 50 publications on PWS and its impact on children. Also, Miller is recognized nationally and internationally as a specialized care provider for those diagnosed with PWS.
“Their support means I am able to perform research studies that will directly impact the quality of life for my patients,” said Miller, director of the UF Health Prader-Willi Syndrome program.
Running for Research has grown exponentially since its first fundraising year. In 2019, the organization – with the help of 13 families – totaled over $20,000. Last year, 85 fundraising teams came together to collect $661,047.
“I am extremely grateful to every single person who has contributed in any way,” Guillou said. “I alone can do nothing. I rely on others to drive our success.”
Few are more dedicated than Guillou, though. For every dollar she raises and every race she participates in, the loving mother considers her daughter. She understands that research can help Clementine live more comfortably.
“The caregiver burden of PWS is thought to be greater than almost any other syndrome,” Guillou said. “I want to be able to look my daughter in the eye and tell her with absolute certainty that I did everything I could to help her live the best life possible. And Running for Research is the way I choose to do that!”
Running for Research has funded several studies over the past four years. Fundraising first went toward a small study of the gut microbiome for adults living with PWS. The 2022 campaign went toward an early intervention diazoxide choline controlled-release (DCCR) study. The study will determine whether DCCR in young children delays, mitigates or even prevents the development of hyperphagia, or excessive eating caused by persistent hunger.
The 2023 campaign will focus on a caucus.
“We will organize and host a meeting to bring together parents, families, drug companies, statisticians, PWS expert physicians and data management experts,” Miller said. “We hope it can change the landscape for clinical trials. We desperately need a better outcome measure.”
Reaching this year’s fundraising goal – $150,000 – will make the caucus happen.
“Historically, it has been very difficult to gain approval for any drug brought in front of the United States Food and Drug Administration for treatment for PWS,” Guillou said. “What is most exciting about our upcoming campaign is the potential to forge an easier path.”
2023 could also mark a milestone. In surpassing the fundraising goal, Running for Research will approach $1 million raised since its establishment. This number represents the numerous sweat droplets, tears and miles that runners have committed toward the cause.
“It is through the strength of our participants and the generosity of our donors that this hope is created and sustained,” Guillou said. “We have done so much, but there is still much to do!”
The second annual Gainesville Fun Run 5K is scheduled for Saturday, March 4, 2023. Held at Veterans Memorial Park in Gainesville, Fla., this fun run brings the community together in support of PWS research.