Foundation for Prader-Willi Blog (21)

Exciting New Treatment May Reduce Disruptive Behaviors in PWS

Evidence from FPWR-supported studies shows that Vagus Nerve Stimulation (VNS) may reduce temper outbursts and other disruptive behaviors in individuals with PWS. With your support, FPWR is taking the steps needed to advance a clinical trial of a VNS ...

July 25, 2023 Read More

Topics: Research

Harmony Biosciences Announces Phase 3 Study of Pitolisant

Harmony Biosciences has announced plans to begin a Phase 3 study of Pitolisant for individuals with Prader-Willi syndrome ages 6 and up in the 4th quarter of 2023. This announcement is made following a positive end-of-phase 2 meeting with the FDA. Ha...

July 20, 2023 Read More

Topics: Clinical Trials

Partnership with CombinedBrain Establishes Biorepository for PWS & SYS

Biorepositories play a crucial role in rare disease research, serving as central locations for collecting, storing, and distributing samples such as tissues, blood, and cells. The Foundation for Prader-Willi Research, in partnership with COMBINEDBrai...

July 19, 2023 Read More

Topics: Resource Development, Volunteer

FPWR 2023 Family Conference - Deep Dive Workshops

You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO. This year's conference has something for every parent traveling this PWS journey. Attend interactive workshops designed to provide practical tools an...

July 11, 2023 Read More

Topics: Parents, Children 0-3, Children 3-6

PWS Clinical Trials Panel [2022 CONFERENCE VIDEO]

In this 1-hour and 7-minute video, FPWR Executive Director Susan Hedstrom presents an overview of current and upcoming PWS clinical trials, and trial representatives provide brief presentations on specific trials.

July 3, 2023 Read More

Topics: Clinical Trials, Family Conference

PWS Registry Data: Dental Issues [INFOGRAPHIC]

Dental issues in PWS can result from symptoms directly related to PWS, such as low saliva production, combined with challenges that individuals with special needs may have with maintaining good oral hygiene. Here, we focus on data from the Global PWS...

June 26, 2023 Read More

Topics: Research

The Comer Family Is “Eager to Meet You” in Denver This October!

A special contribution by guest blogger Andrew Comer The 2022 FPWR Family Conference in Chicago was an important turning point for our family. Our daughter Lucy had been born only six months prior, and diagnosed with PWS a month after that. My wife S...

June 20, 2023 Read More

Topics: Parents

What Can I Expect if I Participate in the KITE-PWS Clinical Trial?

KITE-PWS is an ongoing Phase II trial of RGH-706 for people with PWS ages 17 and up. The study is sponsored by Gedeon Richter, a Hungarian-based company with 120 years of drug development experience. They have produced more than 200 drugs in over 40 ...

June 14, 2023 Read More

Topics: Clinical Trials

FPWR-Funded Postdoc Will Investigate the MAGEL2 Gene

Drug development for new therapies begins with research and discovery. To treat PWS (Prader-Willi syndrome) and SYS (Schaaf-Yang syndrome), we need to understand the differences between individuals with these conditions and typical individuals, right...

June 14, 2023 Read More

Topics: Research, Schaaf-Yang Syndrome

FPWR Blog

Categories

Exciting New Treatment May Reduce Disruptive Behaviors in PWS

Harmony Biosciences Announces Phase 3 Study of Pitolisant

Partnership with CombinedBrain Establishes Biorepository for PWS & SYS

FPWR 2023 Family Conference - Deep Dive Workshops

PWS Clinical Trials Panel [2022 CONFERENCE VIDEO]

PWS Registry Data: Dental Issues [INFOGRAPHIC]

The Comer Family Is “Eager to Meet You” in Denver This October!

What Can I Expect if I Participate in the KITE-PWS Clinical Trial?

FPWR-Funded Postdoc Will Investigate the MAGEL2 Gene

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