Lallemand Health Solutions has partnered with the Prader-Willi Syndrome Association (PWSA) to support Running for Research, an initiative to raise funds for PWS research at the University of Florida (UF).
Running for Research has set a fundraising goal of at least $40,000, and will take place during the Walt Disney Marathon Weekend, from Jan. 6 to 10.
The fundraiser was founded in 2018, and its team is led by Kelly and Stephen Guillou, whose daughter Clementine has PWS.
“My daughter … is doing great, but there are daily challenges,” said Kelly Guillou, in a press release. “She is developing hyperphagia [excessive hunger] and has significant anxiety. She has experienced gut issues and problems with skin picking and hair pulling. All of these symptoms are topics for further medical research that can lead to new medications and treatments.”
The initiative has collected $50,000 since its founding, largely supporting the research of Jennifer Miller, MD, a clinician and UF professor of pediatric endocrinology. Her research includes looking for effective support measures for people with PWS.
“Prader-Willi syndrome is a complex genetic condition that impacts all aspects of an individual’s life,” said Paige Rivard, CEO of PWSA, whose son has PWS. “Without proper support, hyperphagia can lead to chronic overeating and obesity.”
Funds raised will support two studies aimed at treating different aspects of the condition.
The first is a pilot study testing a potential medication to stop or reduce hair pulling — a disorder called trichotillomania in medical literature — and skin picking. These symptoms cause significant problems in individuals with PWS, Miller said.
The second study seeks to determine whether the use of a particular probiotic — live microorganisms intended to have health benefits — can affect how microbes found in the gut microbiota of infants change over the course of PWS.
This study is a collaboration between UF and Lallemand’s Rosell Institute for Microbiome and Probiotics, in Montreal.
“We have been studying the stool composition of people with PWS and they appear to have a very distinctive microbiome which we will continue to study, especially to find when it begins to differ from children without PWS,” said Wendy Dahl, PhD, professor of nutritional sciences at UF.
More information on the Running for Research team is available on its Facebook page.
The group will accept virtual 5 km runners/fundraisers through December.
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