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Foundation for Prader-Willi Blog | Research (24)

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PWS Registry Data: Developmental Milestones in PWS [INFOGRAPHIC]

Since the launch of the Global PWS Registry in 2015, nearly 1,400 participants have enrolled. This month, the registry is highlighting results from the developmental milestones survey. This survey is aimed at understanding the age individuals with PW...
January 22, 2018 Read More

Topics: Research

Dr. Dimitropoulos Uses Telehealth To Bring PWS Behavioral Therapies Home

There are numerous efforts in the healthcare community to increase health care accessibility, education, and support. One of these approaches is “telehealth”, the use of telecommunications methods such as computers and phones to deliver health relate...
December 28, 2017 Read More

Topics: Research

Developing a Clinical Trial Network for Prader-Willi Syndrome

The number of clinical trials for PWS continues to increase at a rapid pace. In 2017, clinicaltrials.gov listed 13 PWS clinical trials, compared with only two trials 10 years ago. With the increase in PWS clinical trials, our community is presented w...
December 21, 2017 Read More

Topics: Research

PWS Registry Data: 61% Report Sleep Issues In PWS [INFOGRAPHIC]

Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep related issue, sleep challenges not only affect the individual with PWS but the entire family. T...
December 19, 2017 Read More

Topics: Research

PWS Clinical Trials Consortium: 2017 Update

The PWS-Clinical Trial Consortium (PWS-CTC) combines the expertise and perspective from multiple disciplines and stakeholders, bringing together members of academia, industry, and patient organizations from around the world in order to address the un...
December 14, 2017 Read More

Topics: Research

Good's Research Explores Downstream Targets of SNORD116

Of the genes on chromosome 15 that are missing or inactivated in PWS, the SNORD116 gene cluster is known to be critical. But it's still unclear how disruption of SNORD116 contributes to the symptoms of PWS. In a new study funded by FPWR, Dr. Deborah ...
December 11, 2017 Read More

Topics: Research

GI Issues in PWS: Dr. Anne Scheimann [VIDEO]

This blog contains excerpts from a presentation on GI Issues in PWS given at the FPWR 2017 conference by Dr. Anne Scheimann.You can watch her complete presentation by clicking on the embedded video below. In case you don't have time to watch the full...
December 7, 2017 Read More

Topics: Research

Talkowski Team Uses CRISPR to Understand Role of Genes Lost In PWS

Although the "PWS region" on chromosome 15 is well defined, it's still unclear how loss of this set of genes leads to the symptoms of Prader-Willi syndrome. Typically, there are several genes in the PWS region that are lost or inactivated in people w...
November 27, 2017 Read More

Topics: Research

PWS Registry Data: 91% Have Used Growth Hormone for PWS [INFOGRAPHIC]

The Global PWS Registry, launched in May of 2015, now has more than 1,000 registered participants diagnosed with PWS, Schaaf-Yang syndrome and USP-7 mutations. This blog shares some highlights of the data collected via the registry to date. Global PW...
November 20, 2017 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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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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