PWSA Blog

Running for Research

PWSA | USA is happy to announce its partnership with Running for Research, a diverse group of runners dedicated to raising funds for the Prader-Willi Syndrome Research Fund at the University of Florida and Dr. Jennifer Miller’s work to identify effective treatments for children and adults with Prader-Willi syndrome (PWS). Since its founding in 2018, the group has nearly tripled in the number of runners and now includes runners of all ages and abilities, from across the world, running local and virtual races in support of the cause.
The group’s founder, Kelly Guillou, says, “Running for Research has entered into a partnership with Prader-Willi Syndrome Association | USA, a national nonprofit organization dedicated to serving the PWS community. With the support of PWSA | USA, RFR will be able to expand its reach and raise more money to support PWS research at the University of Florida. And, because PWSA | USA is a recognized 501(c)3, RFR will now be able to offer sponsorships to corporations. Any sponsorship money received will be split evenly between RFR and PWSA. In addition, PWSA | USA will help raise awareness about RFR by advertising it in its weekly and quarterly newsletters, as well as on its social media accounts. Other than the split of sponsorship revenue, all money raised by RFR will continue to be for the SOLE benefit of the UF PWS Research Fund.”
The group’s fundraising goal for the 2021 Walt Disney World Marathon (January 6 – 10, 2021) is $40,000. Any donations or sponsorships received will help fund two studies: Medication to help reduce hair pulling and skin picking, and probiotic use in infancy and the progression of PWS. All donations are welcome and appreciated, and gifts at the $1,000 level above will be recognized in pre- and post-race marketing, as well as on race t-shirts worn by the Running for Research team. To learn how you can support the Running for Research team, please contact Kelly Guillou at kelly@guillou.biz, or Paige Rivard at privard@pwsausa.org.
Members of Running for Research come from a variety of backgrounds but are united in their determination to help find treatments for the most debilitating aspects of PWS. With your support, we can create a future in which children with PWS is better, happier, and healthier than ever before.
For more information about the Walt Disney World Marathon Weekend, please click here; to order a T-shirt, click here.
UPDATE: December 8, 2020
It’s with great reluctance and disappointment that we announce the cancellation of the Gainesville 5K Fun Run and Kids races. After much thought and discussion, the current pandemic situation makes it impossible to hold the event in person and still protect the health and safety of our group and we will convert to a virtual 5K only format. The virtual 5K can be run anytime from now until January 9, 2021.

Our first priority must be the well being of our PWS loved ones as well as the group at large. Infection rates are at an all-time high and there is little chance of a substantial decline by race day. The University of Florida is only sanctioning virtual events at this time and because we are raising money for UF Health (with the PWS Research Fund being the ultimate recipient), we feel we must also adopt this policy.

We are very sorry for any inconvenience that this cancellation may cause. We are equally sorry that we will not be able to gather as a group and celebrate our amazing accomplishments. Please know that if we felt we could hold this event in a safe and responsible manner, we would do so. Thank you for your understanding.

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