Foundation for Prader-Willi Blog (47)

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

10 Lessons In Strength From a PWS Mom and Fundraiser

Larisa Martiniak, mother of two, hosted her first One Small Step walk this fall in Berkeley, California. We asked her to share a bit of her perspective on what it’s like to find out her child has PWS, and how it has empowered her to take action in th...

December 8, 2017 Read More

Topics: Stories of Hope

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

FPWR Gives Thanks – To All Who Give Us Hope for the Future!

This Thanksgiving, the FPWR team is thankful for: The amazing group of dedicated researchers and clinicians around the world working to tackle the hard problems of PWS. From defining new clinical trial endpoints to helping parents improve how we care...

November 23, 2017 Read More

Topics: News

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

Clinical Trial on DCCR As PWS Treatment: Results + Next Phase [VIDEO]

Update: DCCR is currently enrolling for its Phase 3 study. Information on this study can be found here. This blog contains excerpts from a presentation on a PWS clinical trial of DCCR, the diazoxide choline controlled release tablet. The presentation...

November 15, 2017 Read More

Topics: Research

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

PWS Clinical Trials Consortium: 2017 Update

Good's Research Explores Downstream Targets of SNORD116

10 Lessons In Strength From a PWS Mom and Fundraiser

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

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

FPWR Gives Thanks – To All Who Give Us Hope for the Future!

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

Clinical Trial on DCCR As PWS Treatment: Results + Next Phase [VIDEO]

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