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Research Blog

FPWR Announces First Round of 2019 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2019 totaling $786,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $12,000,000 to research since 2003.

PWS Clinical Trial Webinar: Mindfulness for Temper Outbursts in PWS

A new study is now enrolling people with PWS ages 13 to 30 years old and their caregivers to participate in a study to evaluate the use of Mindfulness-based intervention for the treatment of temper outbursts. A live webinar was conducted May 6th which shared details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 15 minutes in length, followed by 10 minutes of Q&A. You can watch the complete presentation by clicking on the embedded video...

Improving Clarity of Speech: [2018 CONFERENCE VIDEO]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.

May is #PWSAwareness Month | We Have Your PWS Awareness Resources

Visit our PWS Awareness month page on the FPWR website for inspiration, educational resources and fundraising ideas to help you with your awareness activities! And don't forget to sign up for our PWS Awareness Month emails to receive a daily PWS fact that you can share to help build awareness.

PWS Clinical Trials Consortium Meets with FDA for a Critical Path Innovation Meeting

The PWS-Clinical Trial Consortium (PWS-CTC) met with FDA on November 19th for a 90-min session, to discuss the progress made in the last three years to overcome clinical trial challenges in PWS. With an increasing number of clinical trials in PWS, it is a critical time for the FDA and industry partners to fully understand the unmet medical needs and the impact that PWS has on those with the disorder and their families.

Latest PWS Research To Be Presented At 2019 Conference

We cannot wait for this year’s FPWR family conference, and what would an FPWR conference be without research!

A glimpse into the life of a high school senior, who also has PWS.

Gillian Segall is an 18-year-old high school senior from Chicago, IL who happens to have PWS. We asked Gillian to tell us a bit about her life as a high school senior and her plans for afterward. 

Graduating from high school is something that many kids and their parents take for granted. But I’m a kid with Prader-Willi Syndrome so my journey has been full of ups and downs...

Science Fireside Chat (Q & A): [2018 Conference Video]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.

PWS Clinical Trial Webinar: Livoletide

A new study, ZEPHYR, is now enrolling patients ages 8 to 65 years to determine the safety and efficacy of livoletide for the treatment of hyperphagia in PWS. A live webinar was conducted on April 16th sharing details of the study, what you can expect if you choose to participate, and eligibility criteria for participation. The presentation is about 20 minutes in length, followed by 15 minutes of Q&A. You can watch the complete presentation by clicking on the embedded video...

Getting the Right IEP for Your Student With PWS: Lessons from a Principal

Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?