Foundation for Prader-Willi Blog (5)

Progressive Resistance Training in Young People With PWS: Protocol for a Randomized Trial (PRESTO)

It is well known that individuals with Prader-Willi syndrome (PWS) display muscle weakness, hypotonia, and decreased lean muscle mass. Those with PWS have a 25–40% decrease in muscle mass compared to non-affected individuals, and muscle strength is a...

September 13, 2023 Read More

Topics: Research

Life-Changing Connections: Families Share Why They Love the FPWR Conference

Attending a conference means being around people who get it—they understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new...

August 22, 2023 Read More

Topics: News

Growing Up Alongside Prader-Willi Syndrome

Being a mom and a psychologist, I have often wondered about the impact of growing up with a person with Prader-Willi Syndrome (PWS) on siblings. There are research studies that indicate that growing up with a sibling with a developmental disability c...

August 15, 2023 Read More

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

FPWR Blog

Categories

Progressive Resistance Training in Young People With PWS: Protocol for a Randomized Trial (PRESTO)

Life-Changing Connections: Families Share Why They Love the FPWR Conference

Growing Up Alongside Prader-Willi Syndrome

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

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