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FPWR Blog

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Excessive daytime sleepiness (EDS) is one of those symptoms of Prader-Willi syndrome (PWS) that often does not get the attention it deserves. EDS can profoundly undermine success in older children and adults with PWS. It is hard to learn anything in ...

Topics: Therapeutic Development, Research, Research Blog, Sleep

Pivotal Study Results of  VYKAT™ XR Published

Soleno Therapeutics has published results from its pivotal Phase 3 clinical study of VYKAT™ XR (diazoxide choline extended-release tablets, DCCR) in The Journal of Clinical Endocrinology and Metabolism, a peer-reviewed journal for endocrine and metab...

Topics: News

Your 2025 Impact: FPWR Fundraising Wrapped

Every breakthrough, every milestone, and every step forward in 2025 had one thing in common: our community. Because supporters like you showed up. You shared your story. You asked others to stand with you. And it mattered.

Topics: News

Global PWS Registry 2.0 Launches with New VYKAT Module

The Global PWS Registry is powered by the dedication of patients and families who share their PWS experiences. Each piece of data collected helps unlock insights that fuel scientific discoveries and treatment breakthroughs.

Topics: News

Are GLP-1s Safe and Effective for People with PWS?

You have probably heard of GLP-1 receptor agonists (GLP-1s). You may even know someone who has successfully lost weight using one of these popular medications. But what about their safety and effectiveness for people with Prader-Willi syndrome (PWS)?

Topics: Hunger Satiety, Obesity and Energy Balance, Research, PWS People

Dream, Believe, Achieve

I’m a mom, so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to remember something that was said within the past 5 minute...

Topics: Stories of Hope

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

Families and caregivers in the Prader-Willi syndrome (PWS) community whose loved one experiences excessive daytime sleepiness (EDS) know just how challenging it can be in daily life. Data from the Global PWS Registry show that 55% of participants exp...

Topics: Research

Positive Preliminary Results with Setmelanotide and Plans for Evaluation of RM-718 for PWS

Rhythm Pharmaceuticals has shared positive preliminary results from its exploratory Phase 2 trial of setmelanotide in people with PWS and announced, pending successful completion of this phase, plans to advance setmelanotide into a Phase 3 trial. Add...

Topics: News

One Small Step 2025: A Record-Breaking Year of Impact

One Small Step set out with a bold goal in 2025: raise $250,000 for Prader-Willi syndrome research. Thanks to an unstoppable community, that goal was blown right out of the water. This year, One Small Step raised $354,000, bringing real momentum to b...

Topics: Stories of Hope, PWS People