Celebrating over 40 years as a charitable nonprofit, Prader-Willi Syndrome Association (USA) [“PWSA (USA)”] is pleased to offer grant assistance for scientific researchers with an interest in improving the lives of those with Prader-Willi syndrome (PWS). PWSA (USA) is seeking to fund projects for a maximum of $100,000 total per project for a 1-2 year grant support aimed at discovering and developing treatments, cures and technologies benefiting those with Prader-Willi syndrome.

The current focus of PWSA (USA) research is supporting projects that have the potential for immediate and high impact for the PWS community, thus will support research-based translational grants or those showing high promise for translating basic biomedical knowledge to clinical application. The goal is to fast-track better treatment for the syndrome.

At PWSA (USA) we work to integrate what we have learned about the needs of our families through our support programs — with research that we think will make an important and practical difference in our children’s lives, thus the following topics will be the focus area for grants accepted in 2016. For this year, research in these areas will receive priority rating for this RFA:

finding solutions to dealing with gastroparesis in PWS
• pulmonary embolus– the cause of 7% of PWS deaths (PWSA current study of death)
• A retrospective study of the benefits & risks of G-tubes vs NG tubes in infants with PWS
• sleep issues in PWS & how it plays a role in behavior
• understanding the complex issues of an aging population in PWS
• psychotropic medications – what works & doesn’t work with PWS
• motor tics/tardive dyskinesia – reducing the risk; minimizing the impact
• biomarkers for health risk factors in PWS
• postoperative issues & management
• racial disparity in diagnosis & treatment of PWS

Grant Award Timing:

  • FUNDING OF GRANT: As soon as all IRB documents are obtained and completed as well as meeting other requirements.

Proposal Submission

Applications must be submitted as a single electronic pdf package to: Rob Lutz at and to Merlin G. Butler, M.D., Ph.D., at   Please send a separate email to confirm that the file has been received.  Questions regarding the research topics to be addressed in this request for applications (RFA) or suitability of the proposed project may be addressed via email to either party.

One signed hard copy of the final grant proposal should be mailed to:

Rob Lutz

Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238

The face page should be signed, scanned and included in the pdf file. Alternatively, the application can be accompanied by an email from the administrative official authorized to sign for the Institution stating that the grant has been reviewed and approved by the institution’s grant administration office.

Maximum Single Grant Allowed: $100,000

Maximum Length of Grant: 2 years (the grant proportion for the second year is contingent on the timely receipt of the first year’s progress report and status at the end of the first year).


The required font is Arial, 11 point.

The face page should include the following information:

  • Title of the Project
  • Principal Investigator
  • Principal Investigator’s Contact Information
  • Institutional Contact Information: Name; Mailing Address; Phone Number; E-mail Address
  • Signatures: The principal investigator should sign

Technical Abstract:

  • An abstract of not more than 400 words should be provided with an overview of the proposed studies. The abstract should include background, objective/hypothesis, specific aims and study design.
    Lay Abstract and Relevance Statement (250 words maximum) – Provide an abstract in non-technical terms for an informed lay person. The goal of this abstract is to communicate the rationale and scientific objectives of the study to the non-scientific community.
  • The potential relevance of the proposed work to the mission of PWSA(USA) should be stated. Explain how the completion of the proposed study will significantly advance our understanding of Prader-Willi syndrome and/or develop a potential new therapeutic approach for the treatment of symptoms associated with PWS.


  • Budget: Provide the amount requested, broken down by categories: personnel, supplies, equipment, patient costs, travel, and other expenses. In the Budget Justification, provide a brief explanation of the costs in each category. Include under ‘Personnel’ a list of all of the key personnel involved in the project, the percent of their time to be spent on the project, and a brief description of their role. Salary for the principal investigator is permitted, but should not exceed $12,500. Travel expenses up to $1,750 are allowed. Equipment expenses may not exceed $3,000.  PWSA(USA) requests that institutions allow indirect costs to be at or under 8% in order to maximize the impact of these small grants.
Period of Support:

NIH style biosketch (2-4 pages) of primary investigators of the Project

  • Specific Aims: Concisely state the specific research goals of the proposal.
  • Background and Significance: Explain the goals of the research in the context of the field, emphasizing the significance of the hypothesis to be addressed and for translational application.
  • Preliminary Studies: Preliminary data are welcomed, but because PWSA(USA) is particularly interested in new, innovative translational research, preliminary data are not required.
  • Experimental Design and Methods: Provide the details of the experimental plan that will be used to accomplish the specific aims. Routinely used methods do not need to be described in detail; however, new or unusual methods should be described in enough detail to allow evaluation. Identify potential limitations/pitfalls and alternative approaches.
  • An email will be sent within three working days after submission confirming that the application has been received. If you do not receive confirmation of receipt, please contact us via email or call 800-926-4797 and ask for Janalee Heinemann.

Grant will be judged on:

  • The ability of the Principal Investigator and the research institution to complete the project successfully.
  • The potential for the project to provide valuable and accurate insight into an important topic area which would fulfill PWSA(USA) goals outlined above.
  • The potential of the project to impact rapidly and translate to the PWS community.
  • The reasonableness of the time and budget required given the scope of the research and its potential significance.
  • The likelihood that the project could not and would not receive funding from alternative sources (NIH, pharmaceuticals, foundations) without pilot data and likelihood of additional funding if the objectives of the study are successfully met.