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.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.