Foundation for Prader-Willi Research
340 S Lemon Ave
Walnut, CA 91789
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The mission of the Foundation for Prader-Willi Research is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.
The Foundation for Prader-Willi Research (FPWR) was established in 2003 by a small group of parents who saw the need to foster research that would help their children with Prader-Willi syndrome lead more healthy and fulfilling lives. Today, FPWR is composed of parents, family members, researchers, industry partners and other stakeholders who are interested in addressing the many issues related to PWS, including childhood obesity, intellectual disability, psychiatric disorders and autism spectrum disorders. We are a mission-focused organization that values innovative strategies to advance scientifically sound, high impact research.
FPWR supports innovative PWS research through a competitive, investigator-initiated grant program. Grants are selected based on the collaborative input of expert scientists and parent advocates, to ensure that funded research is both scientifically meritorious and relevant to our community. FPWR also makes targeted research investments to foster collaboration and develop critical research resources. A Translational Research Program focuses on identifying promising therapeutic strategies and efficiently advancing them into the clinical setting, frequently in collaboration with industry partners. Finally, a program of active engagement with regulatory agencies ensures that the perspectives of the PWS patient community are incorporated throughout the drug development process.
FPWR is dedicated to supporting research to advance the understanding and treatment of PWS, a complex neurodevelopmental disorder characterized by hypothalamic dysfunction, hyperphagia, intellectual disability and behavioral and psychiatric problems. Priority areas include studies to understand the molecular basis of the PWS phenotype, regulation of appetite and energy homeostasis in individuals with PWS and development of novel therapeutic interventions using in vitro and in vivo models of PWS. FPWR prioritizes innovative research that will lead to new therapies to alleviate the symptoms associated with PWS. A competitive grants program supports research projects (up to $100,000 per year, up to two years in support) addressing these areas of emphasis. Grants applications are accepted twice a year.
In addition, FWPR actively develops and supports collaborative research efforts to advance priority areas through targeted preclinical studies, clinical trials and natural history studies through the Global PWS Registry. These programs are developed in collaboration with scientists and clinicians.
FPWR is a 501(c)(3) nonprofit organization. Financial information for fiscal year 2014, ending 12/31/2014, audited financial statements:
- Revenue: $3,032,805
- Assets: $3,824,018
- Gifts Received: $2,785,963
- Total Expenditures: $1,177,176
- Since its inception, FPWR has supported more than $7 million in PWS research, supporting more than 120 research projects in 12 countries.
- FPWR supports a broad portfolio of research, from fundamental studies to understand the molecular basis of the PWS characteristics, to the development of novel therapeutics, through early phase clinical trials to evaluate new drugs (e.g., DCCR, oxytocin) and devices (tDCs, vagus nerve stimulation) in PWS.
- FPWR-supported research has made significant contributions to the understanding and treatment of PWS, with more than 80 publications in high-impact medical journals to date.
- In 2015, FPWR launched the Global Prader-Willi Syndrome Registry, a comprehensive database aimed at defining the natural history of PWS, and serving as a resource to define priority research areas and accelerate clinical trial enrollment. More than 850 individuals are currently enrolled.
- FPWR has supported the development of cellular and animal models of PWS that are shared across the scientific community.
- FPWR has worked with several industry partners to advance preclinical studies, provide expertise on the unique aspects of PWS that impact clinical trial development and implementation, facilitate the completion of clinical trials, and assist in dissemination of information back to the community.
- FPWR has sponsored workshop-style meetings focused on priority areas (eg, mental health, appetite, genetics), engaging experts to define research questions, identify opportunities and guide the development of targeted initiatives.
FPWR is governed by a Board of Directors, which is comprised primarily of family members of individuals with PWS. A Scientific Advisory Board oversees the grant program and provides guidance on scientific strategy and opportunities. The Scientific Advisory Board is composed of basic and clinical scientists who are experts in PWS and/or fields that are directly relevant to PWS research.
- Executive Director: Susan Hedstrom, firstname.lastname@example.org, (888) 322-5487 ext 709
- Director of Research Programs, Theresa Strong, email@example.com, (888) 322-5487 ext 702
- Director of Development, Hannah Berger, firstname.lastname@example.org, (888) 322-5487
- Director of Translational Research, Nathalie Kayadjanian, email@example.com, (888) 322-5487
- Associate Director of Research Programs, Jessica Bohonowych, firstname.lastname@example.org, (888) 322-5487
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- Interaction with regulatory agencies
- Building research collaborations
- Maintaining a patient registry or biobank