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Presentations and Management of Sleep Disorders in PWS [2023 Conference Video]

December 20, 2023

In this 1 hour and 2‑minute video, Dr. Jessica Duis, an Associate Professor of Pediatrics and Genetics at Children’s Hospital Colorado, University of Colorado, will highlight presentations of sleep disorders in PWS, diagnostic evaluation, and treatment considerations. Click below to

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

‘He Shows Me Everyday What a True Superhero Looks Like’ Says PWS Mom

May 31, 2023

A special contribution by guest blogger Heather Osterman. Max came into the world with a bang...or more accurately, a limp body, not breathing, and blue. I went from being induced, since Max was quite cozy where he was, to a

New Venture Philanthropy Investment: Palobiofarma

May 4, 2023

The Foundation for Prader-Willi Research (FPWR) has provided a new venture philanthropy award, in the form of a convertible loan, to Palobiofarma S.L., a Spanish biopharmaceutical company focused on developing innovative treatments for serious diseases. Palobiofarma has a robust pipeline

'She Is Tough, She Is a Fighter' Says PWS Mom Inspired by Daughter

March 2, 2023

Krysten shared her journey with her child, offering a heartfelt look at the challenges, triumphs, and lessons that come with parenting a child with Prader-Willi Syndrome (PWS). From the moment Krysten’s child entered her life, she has been continually inspired

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