Foundation for Prader-Willi Blog (9)

Artist of the Year 2023 Winners

A special blog contribution from our 2023 FPWR Art Auction Participants! Our 2023 Artist of the Year competition was a great success, raising critical funds for PWS research! We extend our heartfelt gratitude to all our extraordinary artists who part...

August 8, 2023 Read More

Topics: Stories of Hope

Aardvark Announces Rare Disease Designation and Expands Ongoing Phase 2 Trial

Aardvark Therapeutics, a clinical stage biopharmaceutical company, has reported receipt of a Rare Pediatric Disease Designation in Prader-Willi Syndrome (PWS) from the FDA for its lead program ARD-101.

August 3, 2023 Read More

Generous Donor Ignites the $25,000 Challenge

Recently, a matching donor came forward, igniting the $25,000 Challenge. Today, we want to introduce you to our generous matcher: Maria.

August 3, 2023 Read More

Topics: Advocacy

New PWS β-Cell Model Reveals Details Underlying Insulin Secretion Defects

Sugar glucose is the body’s primary source of energy. Maintaining a healthy level of glucose in blood (not too high or too low), so that it can be delivered to all the other tissues of the body, is regulated by the hormone insulin. Insulin is produce...

July 25, 2023 Read More

Topics: Research

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

FPWR Blog

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Artist of the Year 2023 Winners

Aardvark Announces Rare Disease Designation and Expands Ongoing Phase 2 Trial

Generous Donor Ignites the $25,000 Challenge

New PWS β-Cell Model Reveals Details Underlying Insulin Secretion Defects

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

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