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Beyond Ironman: Nurturing Perseverance and Advocacy in the Face of PWS

December 5, 2023

A special blog contribution from Abbie Ogilbee Training for an Ironman is no small commitment. It takes planning, preparation, dedicated time away from family, special equipment, and countless hours of practicing the different sports. Preparing for this endurance challenge mirrored

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

November 29, 2023

It has been an exciting time for PWS research and clinical trials. The field has been working hard to find effective treatments for the symptoms of PWS to help our children lead more independent and fulfilling lives. In the last

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Karla Runs the NYC Marathon in Honor of Grandchild

November 15, 2023

A special blog contribution from Karla Leighty. Prior to Lana's birth, our daughter-in-law, Krysten, knew something wasn't right with her pregnancy. The baby wasn't moving as much as she should have been,and the ultrasounds indicated she was smaller than expected.

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FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS

September 27, 2023

PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of

Soleno Therapeutics Announces Positive Statistically Significant Top-line Results from Randomized Withdrawal Period of Study C602 of DCCR for Prader-Willi Syndrome

September 26, 2023

We are excited to share the news that Soleno has announced positive, statistically significant top-line results from the randomized withdrawal period of study c602 of DCCR for Prader-Willi Syndrome. In the study, patients taking DCCR showed a highly significant improvement

Aardvark Announces Rare Disease Designation and Expands Ongoing Phase 2 Trial

August 3, 2023

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. This designation means Aardvark is eligible for a Rare Pediatric Disease Priority

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

July 25, 2023

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

VNS May Reduce Disruptive Behaviors in PWS

July 25, 2023

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 conducting a clinical trial of a VNS device to make this treatment available

Harmony Biosciences Announces Phase 3 Study of Pitolisant

July 20, 2023

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

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