Since 2019, Running for Research has grown in ways its founders never anticipated. Supported through peer-to-peer fundraising efforts, Running for Research is a fundraising program dedicated to raising awareness and support for Prader-Willi Syndrome research at the University of Florida.
“I am thrilled to have this platform, which was started by a parent of a patient and is completely managed by parents of patients,” said Jennifer Miller, M.D., pediatric endocrinologist and director of the UF Health Prader-Willi Syndrome program.
“Their support means I am able to perform research studies that will directly impact the quality of life for my patients,” Miller said.
UF is internationally known for its PWS research and clinic. Families from all over the United States, Canada and other international locales travel to Gainesville to participate in the clinical program. This year, Running for Research participants were just as diverse.
“We had 51 teams raise money for the 2021 event,” said Kelly Guillou, one of the Running for Research founders and parent to a PWS patient, Clementine.
This year, Running for Research raised an incredible $129,000 for PWS research at UF Health. This is a remarkable achievement given the difficulties of transforming an in-person race event to virtual, due to the COVID-19 pandemic, and a significant jump from the $19,000 this group raised in 2019. In a normal year, participants train to race at Walt Disney World as part of the annual Run Disney races.
“By my estimation, our principle runners ran over 210 miles collectively, and if you add additional family members who ran along for support, we likely logged more than 250 miles,” Guillou said.
Raising money is an important part of this program, but building community for families affected by PWS is another powerful piece of this initiative.
Maggie Senese and her family have participated in Running for Research since 2019. Her daughter, Bridget, is a PWS patient and the source of her motivation.
“When our family signed up, the ultimate goal was to go beyond our comfort zone and push ourselves the way we push Bridget every single say,” Senese said.
“Any time we wanted to give up, we would think of her. We would think of all the times she wanted to stop, all the times she wanted to just give up, and all the time she wanted to quit. But we didn’t let her!”
Prader-Willi Syndrome is a rare genetic disorder that occurs in approximately one out of every 15,000 births. It is a complex condition that affects many areas of development, including growth, metabolism, cognition and behavior. Onset hyperphagia, a constant and unquenchable raging hunger, is the main symptom that keeps most individuals with Prader-Willi Syndrome from becoming independent.
Because of this complicated medical condition, families find comfort by sharing their experiences with others who are undergoing similar challenges. This is one reason first-time participant Jennifer Abshire and her family joined Running for Research as they navigate treatment for her daughter, Claire.
“I loved knowing so many families were working toward a common goal for our kids, and I was blown away by the generosity of friends and family,” Abshire said.
“Receiving a PWS diagnosis feels devastating, and knowing there is no cure can bring moments of hopelessness. But I want to take a positive outlook for my child and my family. Beyond getting Claire to therapies, fundraising is a concrete action I can take to help give her a chance at a bright, independent future.”
The Senese and Abshire families raised $11K and $7K, respectively. In total, the $129,000 raised will support two research studies. The first is a gut microbiome study of PWS patients.
“There is evidence to suggest that the gut microbiome of those individuals with PWS presents with differences versus the ‘typical’ population. Could these variances make a difference in the presentation of the syndrome and its accompanying symptoms?” Guillou said.
The second is a study of a new medication that is in trials with “typical” populations to help control skin picking and hair pulling. Guillou and other parents hope this could work with PWS individuals, too.
In the meantime, the Running for Research program continues to expand. They are planning for additional races and community events to bring together PWS families throughout the year, pending COVID-19 safety restrictions.