Request for Prader-Willi Syndrome Research and Mini-Fellowship Grant Applications
The Prader-Willi Syndrome Association USA (PWSA | USA) is a nonprofit organization formed in 1975 to enhance the quality of life of those affected by Prader-Willi Syndrome (PWS) through research, family support, and advocacy. The purpose of this request is to solicit applications for research projects whose findings will directly impact individuals living with PWS and their families.
We are also proud to announce a new initiative to provide mini-fellowship grants to support providers to deepen their knowledge of Prader-Willi Syndrome through clinical proctorships with individuals with expertise in Prader-Willi Syndrome.
The PWSA | USA research priorities are to gather knowledge about PWS, support the application of therapies, and recruit new providers and investigators to the field.
With regards to research topics, a broad range of areas will be considered, from societal and behavioral to biological, particularly in understudied areas such as adult health, quality of life, positive health outcomes, and diverse populations. Support is limited to clinical studies on human subjects and includes retrospective/secondary data analysis and medical informatics.
Types of Awards Available
PWSA | USA will consider three types of funding:
- Applicants may request up to $100,000 USD to fund research on Prader-Willi Syndrome. The term of the award is 12 months, with the possibility of a second grant period of 12 months of funding upon competitive renewal.
- Applicants may choose to request a smaller budget and/or shorter duration. Awards of up to $10,000 USD may be considered on an individual and rolling basis until August 15, 2024.
- PWSA | USA will also consider funding a mini-fellowship of up to $25,000 USD to enable providers currently in practice to shadow providers with expertise in Prader-Willi Syndrome in combination with an academic project. The requirements directly below apply to any mini-fellowship to the extent that they are applicable. Please refer to the mini-fellowship application guidelines* at the end of this document for additional information.
Please submit LOI’s to: Stacy Ward at sward@pwsausa.org. If you have questions, please call (941) 312-0400.
Read our full announcement and additional LOI guidelines by clicking the button below.
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.