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Research Blog

Welcome FPWR's New CEO, John Walter

Please join me in welcoming FPWR's newest team member, Chief Executive Officer John Walter!

Walter has dedicated his entire professional career to the non-profit sector, with over 30 years of experience in the field. Former CEO of the Leukemia and Lymphoma Society, Walter is an accomplished leader with a proven track record of building successful organizations...

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 related services and information. Dr...

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...

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...

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 unmet needs of clinical trials...

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...

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 the day to day.

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 video, we've captured some of the key points in the notes below.

New Study: How Oxytocin Delivery Impacts PWS Social Behavior, Feeding

There are a number of clinical studies exploring the potential benefit of oxytocin as a therapy in PWS, particularly with regards to feeding and social behaviors...

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 PWS. Typically, there are several genes in the PWS region that are lost or inactivated in people with PWS. Teasing out the relative contribution of each of these genes to the spectrum of PWS symptoms will help prioritize and guide therapeutic development...