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FPWR Blog

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Our Son Makes Everyone He Meets Feel Special

A special contribution by guest blogger Elizabeth DeSimone Elizabeth shared her story via our Stories of Hope questionnaire.
October 27, 2016 Read More

Topics: Stories of Hope

My Son Enriches My Life In Every Way

A special contribution by guest blogger Natalie Neto Natalie shared her story via our Stories of Hope questionnaire.
October 24, 2016 Read More

Topics: Stories of Hope

Roadmap for the Future: The PWS Research Plan 2017-2021

Prader-Willi syndrome is a complex genetic disorder affecting nearly every system in the body. A challenge with this level of complexity requires a well thought out strategy to overcome. The Foundation for Prader-Willi Research, with the input of com...
October 20, 2016 Read More

Topics: Research

Mental Health Professionals Release 10 PWS Research Recommendations

Mental health professionals have published 10 recommendations for Prader-Willi syndrome (PWS) research. These recommendations create urgency for further research and treatments to improve quality of life and increase independence for people with PWS....
October 13, 2016 Read More

Topics: Research

Developing Oligonucleotides To Rescue Missing SNORD115 In PWS [VIDEO]

Dr. Stefan Stamm has been actively involved in the PWS research community for a number of years. His group has received FPWR funding to explore the complex biology of SNORD115 and SNORD116 in PWS, as well as pursue ways to rescue the function of thes...
October 3, 2016 Read More

Topics: Research

FPWR Receives $30,000 PCORI Award for Real World Data Workshop

The Patient-Centered Outcomes Research Institute (PCORI) has awarded FPWR $30,000 to support real world data research readiness in the Prader-Willi syndrome community! This support was awarded to FPWR as a Eugene Washington PCORI Engagement Award.
September 26, 2016 Read More

Topics: News

Loss Of Magel2 Contributes To Muscle Weakness in PWS

Muscle weakness (hypotonia) is often the most obvious first symptom in newborns with PWS. While hypotonia in infants is most severe, low muscle tone continues to limit endurance and reduce participation in daily activities in children and adults with...
September 20, 2016 Read More

Topics: Research

Genetic Therapy Researchers Work to Reactivate PWS Genes, Identify New Targets

All individuals are born with two copies of chromosome 15: one copy comes from the mother, the other the father. In the case of Prader-Willi syndrome, the paternal copy is missing a portion of the chromosome (deletion), or is gone altogether(UPD), bu...
September 12, 2016 Read More

Topics: News

Real-World Data, Real-World Evidence, and PWS

"Real-world data" and "real-world evidence" (RWD and RWE) are hot buzz words in the fields of healthcare and research. This is an emerging area of data acquisition and analysis, with the potential to transform clinical research and patient care. It i...
September 8, 2016 Read More

Topics: Research

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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