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FPWR Blog

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Central adrenal insufficiency (CAI) in PWS: update on prevalence and potential effects

An FPWR blog in September 2009 highlighted research into the potential role of central adrenal insufficiency (CAI) in cases of sudden and unexpected death in PWS patients. Some recent studies provide more information on the prevalence of CAI in PWS a...
March 23, 2013 Read More

Topics: Research

Oral Health in PWS

This blog was coauthored by Jessica Bohonowych and Theresa Strong
March 23, 2013 Read More

Topics: Research

InnoCentive Research Prizes Awarded!

"Great discoveries and improvements invariably involve the cooperation of many minds." - Alexander Graham Bell In 2011 FPWR launched the first PWS Research Challenge! Using the InnoCentive crowdsourcing platform, we asked “solvers” from all disciplin...
June 8, 2012 Read More

Topics: Research

More hopeful news for older individuals with neurodevelopmental disorders

Once again, there's been a signficant shift in scientific thinking about the fixed nature of brain development. The idea that the brain can't be changed after early childhood has been turned on its head in the past few years, and a new research study...
April 12, 2012 Read More

Topics: Research

PWS-InnoCentive Research Challenge is Live!

Here's a blog from FPWR Board member Shawn Johnson about the "PWS Research Challenge: Advancing Appetite and Satiety Research", which FPWR has launched in collaboration with InnoCentive. Shawn championed the idea of a crowdsourcing approach to genera...
December 26, 2011 Read More

Topics: Research

Web resources for learning about genetics and translational research

Even if you never thought of yourself as a science nerd, it’s worthwhile for parents of children with rare diseases to become educated about the research and the drug development process (when you’re not attending to the thousand other things you nee...
December 7, 2011 Read More

Topics: Research

Modafinil improves daytime sleepiness in PWS

“Excessive daytime sleepiness” (EDS) is one of those symptoms of PWS that tends not to get too much attention – although very common, it just doesn’t seem that serious. However, EDS can profoundly undermine success in older children and adults with P...
June 15, 2011 Read More

Topics: Research

PWS Clinical Guidelines to Download and Share

Dr. Shawn McCandless and the Committee on Genetics at the American Academy of Pediatrics have just published "Clinical Report: Health Supervision for Children with Prader-Willi Syndrome" in the Journal of Pediatrics. The article is available for down...
January 2, 2011 Read More

Topics: Research

PWS iPS cells are here!

Having just recently announced FPWR’s projects funded in 2010 [see full list here], it’s very exciting to already be able to announce a major advance as a result of that funding. Dr. Marc Lalande and colleagues at the University of Connecticut Stem C...
September 27, 2010 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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Covina, CA 91723

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