All together ”Running for Research” to fund Prader-Willis syndrome research
Oct 2, 2020
Mirabel, September 9 2020 – Lallemand Health Solutions is pleased to announce its partnership with Prader-Willi syndrome association (PWS) USA and “Running for Research,” a charitable initiative to raise funds for PWS research at the University of Florida. The next run will take place at the Walt Disney World Marathon from January 6 to 10, 2021.
Since its founding in 2018, the “Running for Research” team has raised $50,000 for the Prader-Willi Syndrome Research Fund at the University of Florida, mainly to support Dr. Jennifer Miller’s work to identify effective support measures for children and adults with PWS. The group, which consists of parents, professionals, friends, and individuals with PWS, have set their 2021 fundraising goal to $40,000… or more!
“Prader-Willi syndrome is a complex genetic condition that impacts all aspects of an individual’s life. From birth, children with PWS can experience a wide range of physical challenges, including poor muscle tone and slowed growth. Later, children and adults with the syndrome often struggle with behavioral challenges and hyperphagia (an insatiable feeling of hunger). Without proper support, hyperphagia can lead to chronic overeating and obesity,” explains Paige Rivard, CEO of PWSA | USA. Rivard’s son has the syndrome.
“My daughter lives with PWS. She is doing great, but there are daily challenges,” shares Kelly Guillou, the Running for Research team leader. “She is developing hyperphagia 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.”
“There are two studies that will be considered with the funds that we will raise,” says Dr. Jennifer Miller, a lead researcher at the University of Florida and PWS care specialist. “The first is a pilot study to test a new medication to help reduce or stop trichotillomania (hair pulling disorder) and skin picking, which cause significant problems in individuals with PWS,” says Dr. Miller.
“The second study would be to look into infant’s microbiota as they go through the various stages of PWS to determine if the administration of a particular probiotic strain would impact the compositional shifts that can be observed,” adds collaborator Dr. Thomas Tompkins, Research Director at the Rosell Institute for Microbiome and Probiotics by Lallemand.
“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,” completes Dr. Wendy Dahl, associate professor in the Food Science and Human Nutrition Department at the UF.
If you would like to learn more about the “Running for Research” team, please visit https://www.facebook.com/RunningForResearchPWS/. Or, to make a donation please visit https://donate.giving.ufhealth.org/fundraiser/2741928.
About University of Florida Health
The University of Florida Health, is an academic health center and part of one of the U.S nation’s Top 10 public research universities. UF Health represents the commitment of more than 26,500 employees to reach higher and farther, both translating scientific discoveries into patient care advances and implementing them to help people get back to living their best possible life.
About Prader-Willi Syndrome Association |USA
Formed in 1975, Prader-Willi Syndrome Association | USA is a nonprofit organization that unites individuals and families with professionals and organizations to empower those affected by Prader-Willi syndrome. PWSA | USA supports the PWS community by providing education and support, raising awareness, and funding life-changing research.
About Dr. Jennifer Miller, professor of pediatric endocrinology at the University of Florida
Jennifer Miller is a Professor of Pediatric Endocrinology at the University of Florida. Dr. Miller’s research focuses on treatment of individuals with Prader-Willi syndrome and early-onset obesity. The majority of her research efforts currently, are focused on identifying the etiology and possible treatment for hyperphagia in Prader-Willi syndrome. She has been working with individuals with Prader-Willi syndrome and early-onset obesity for the past 18 years. She currently follows over 400 patients with Prader-Willi syndrome from around the world and over 100 patients with early-onset morbid obesity from across the USA. She is currently working on developing clinical treatment trials for individuals of all ages with Prader-Willi syndrome.
Marilou Luneau, Content Manager, Lallemand Health Solutions
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