The Foundation for Prader-Willi Research (FPWR) seeks to stimulate research that will improve the lives of individuals with PWS in the near term. We are particularly supportive of research developing and evaluating new therapeutic approaches to PWS. We also are interested in supporting innovative research that will lead to significant advances in our understanding of this disorder.
Prader-Willi Syndrome (PWS) is a multi-faceted disorder causing developmental disability, hyperphagia usually with obesity, behavioral problems and an increased incidence of psychiatric illness. Parents are typically counseled to provide a low-calorie (typically low fat) diet, adjusted for the age and activity level of the child. There is little guidance provided to families or nutrition specialists on the optimal amounts of macronutrients (carbohydrate, fat and protein) in the diets of children with PWS, aside from the importance of meeting minimum requirements for vitamins and minerals and limiting foods with low nutritional value.
FPWR is now requesting Letters of Intent (LOIs) from researchers interested in studying the effect of dietary interventions in PWS. We are particularly interested in proposals from teams who have previously studied or applied dietary interventions in children with developmental disabilities. Dietary interventions can include but are not limited to a macronutrient-based diet, a ketogenic or modified ketogenic diet, or a low glycemic index diet. The successful team will include a clinician familiar with health issues that could arise more frequently in the PWS population during the intervention. Outcomes will include (but are not limited to) changes in weight, body composition, hyperphagia questionnaire scores, behavioral assessments from parents and caregivers, and plasma markers (e.g. insulin) as appropriate. FPWR will assist with recruiting of participants through the newly launched Global PWS Registry, upon approval of the Registry Advisory Board.
Preliminary inquiries about the suitability of proposed experiments and other questions regarding the grant application and review procedures can be sent to Jessica Bohonowych, Associate Director of Research Programs Jessica.Bohonowych@fpwr.org, or Theresa Strong, Grants Program Director firstname.lastname@example.org or by contacting FPWR (contact information at www.fpwr.org ). Applications will be submitted through ProposalCentral (https://proposalcentral.altum.com/).
Budget – A detailed budget will be requested during the full application process. The maximum budget will be $100,000 in direct costs, plus indirect costs of up to 8% of direct costs, to be spent over 1 year. Higher budgets may be considered depending on the scope of the project, and projects with lower budgets are also welcome.
Application Review and Award: Grant proposals meeting the technical requirements will be reviewed on the basis of merit by scientific reviewers. An advocate reviewer will evaluate the relevance of the proposed research to the PWS community. Final funding decisions will be based on scientific merit, relevance and the suitability of the research with respect to the programmatic goals of FPWR.
Application Guidelines: LOIs are to be submitted on-line through ProposalCentral (https://proposalcentral.altum.com/). Please contact Jessica Bohonowych at email@example.com to express interest in submitting an application and to request access to the submission portal. Selected LOIs will be invited to submit a full proposal. Full grant proposals are limited to a 5-page research plan. Guidelines, instructions, and review considerations, can all be found through the links below.
Letter of Intent Due Date: September 1st, 2015, 5pm EST
Please direct questions to: firstname.lastname@example.org