Foundation for Prader-Willi Blog (6)

Exciting New Treatment May Reduce Disruptive Behaviors in PWS

UPDATE, January 2024: The VNS4PWS clinical trial is now enrolling participants ages 10-40 years old. Learn more about the study here >> Recent evidence from FPWR-supported studies shows that Vagus Nerve Stimulation (VNS) may reduce temper outbu...

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

Partnership with CombinedBrain Will Establish Biorepository for PWS & SYS

The Foundation for Prader-Willi Research has partnered with COMBINEDBrain to establish a biorepository of blood and urine samples that will help speed treatments for people with PWS and other neurodevelopmental disorders. Biorepositories play a cruci...

July 19, 2023 Read More

Topics: PWS People, Volunteer, SYS

'It’s a Beautiful Gift I Never Expected' Says SYS Hero and Mom

A special blog contribution from Roya Malaekeh. People often ask what it was like getting a diagnosis, especially since we had endured a year without one. When I got that phone call from the geneticist, it felt like a boulder was lifted off my chest ...

July 13, 2023 Read More

Topics: Stories of Hope

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, Adults, 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

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

FPWR Blog

Categories

Exciting New Treatment May Reduce Disruptive Behaviors in PWS

Harmony Biosciences Announces Phase 3 Study of Pitolisant

Partnership with CombinedBrain Will Establish Biorepository for PWS & SYS

'It’s a Beautiful Gift I Never Expected' Says SYS Hero and Mom

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?

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