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Research Funding Opportunities

PWSA (USA) Funding Opportunities for Research on Prader-Willi Syndrome

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 $75,000 total for a two year grant that is aimed at discovering and developing treatments, cures, and technologies benefiting those with Prader-Willi syndrome.

PWSA (USA) is especially interested in supporting research projects that have the potential for immediate and high impact to the PWS community. However, PWSA also seeks to balance its research funding between “basic” and “applied” research in order to seek new insights that could benefit its membership right away as well as to elucidate the causes of Prader-Willi syndrome to spur more potent and complete therapies in the future. While PWSA (USA) is open to insightful grants in any subject area, the following areas are of particular interest to our constituency at this time. Research (basic or applied) in these areas will receive the highest priority:

  • Obesity -- Obesity is the number one threat to the life expectancy and quality of life of someone with PWS. The combination of hyperphagia and slow metabolism result in exposure to extraordinary weight gain and impose extraordinary stress on both the person with the syndrome and their families. Hyperphagia is the overwhelming problem preventing independent living by anyone with PWS. Controlling the chronic insatiable feeling of hunger and/or extreme drive to eat and increasing the metabolic rate are issues that are high priorities for PWSA (USA).
  • Behavior/psychological issues – Even when weight is controlled, the impact of the complex behavior and psychological issues has significant impact on the person with the syndrome and the entire family. Potential behavioral health interventions are a high priority with PWSA (USA).
  • Respiratory -- Due to lifelong hypotonia and the complications of obesity, individuals with PWS are at risk for pulmonary issues. Sleep apnea, health risks due to upper respiratory infections, and aspiration are some of the concerns that PWSA (USA) believes are worth studying.
  • Other:  GI issues, genotype/phenotype, genomics/proteomics, brain imaging and function, biomarkers for co-morbidities.

Basic science: Most of the above issues are the result of an inherent problem in human biology, e.g., genetic makeup, endocrine systems, neurological pathways, or deficiencies in structure. PWSA (USA) encourages basic research into the foundation of these systems which will elucidate the root causes of the clinical problems and lead to practical treatments.

Grant Award Timing:

  • GRANT APPLICATION DUE: current grant applications are only being taken for the best idea grants on hyperphagia. For more information go to

Proposal Submission:

 Applications must be submitted as a single electronic pdf package to: Janalee Heinemann, MSW, at and to Merlin Butler, M.D., Ph.D., at   Please send a separate email to confirm that the file has been received.  Questions regarding the research questions to be addressed in this RFA, the suitability of the project may also be addressed via email to either party. 

Two signed copies should be mailed to:

Janalee Heinemann, Director of Research & Medical Affairs
The Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238

The first 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

Maximum Single Grant Allowed: $75,000

Maximum Length of Grant: 2 years (the second year funding contingent on the timely receipt of the first year’s progress report and status)   


 The suggested font is Arial, 11 point.

1. Face Page

The face page should include the following information:

    * Title of the Project
    * Principal Investigator
    * Principal Investigator Contact Information:
     * Institutional Contact Information: Name; Mailing Address; Phone Number; Fax Number; e-  mail address
    * Signatures: The principal investigator should sign

2.  Abstract

Technical Abstract - An abstract of not more than 350 words should provide an overview of the proposed studies. The abstract should include a brief background, objective/hypothesis, specific aims and study design.

Lay Abstract and Relevance Statement (300 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.

3.  Budget and Justification

 Budget: Provide the amount requested, broken down by categories: personnel, supplies, equipment, patient costs, travel, 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 keep indirect costs at or under 8% in order to maximize the impact of these small grants.

Period of Support:

4.  Qualifications of the Investigators (Biosketch) -- NIH style biosketch (2-4 pages) of primary investigators of the Project

 5.  Research Plan (5 page limit)

  • 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.

  • Preliminary Studies: Preliminary data are welcomed, but because PWSA (USA) is particularly interested in new and innovative 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 two 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 800-926-4797and 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 on 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.


 edited: 02/20/2013

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