Families affected by Prader-Willi syndrome (PWS) often have questions about their child’s development and what they can expect throughout their child’s journey. While every individual with PWS follows their own unique path, data collected through the Global PWS Registry helps provide a better...
Source: FPWR Blog
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Published: July 7 2026 - 10:55 AM
When Amy Reinmuller first considered hosting One Small Step Baton Rouge, the idea stayed in the “maybe someday” category for a long time. Fear kept getting in the way. “What if nobody comes?” she remembered thinking. “What if I can’t pull it off?” Like many parents navigating a new Prader-Willi...
Source: FPWR Blog
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Published: June 6 2026 - 05:45 AM
Rhythm Pharmaceuticals recently shared encouraging six-month results from its ongoing Phase 2 clinical trial of setmelanotide in people with Prader-Willi syndrome (PWS). The findings, presented at ENDO 2026, suggest that treatment with setmelanotide may help improve not only weight and body...
Source: FPWR Blog
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Published: June 6 2026 - 09:44 AM
The night before One Small Step Maryland, Jen Lieberman was worried nobody would come. By the next morning, her family was scrambling to find more raffle tickets. "My brother-in-law literally ran to Staples," Jake laughed. "We were looking around thinking, 'Oh no... do we even have enough?'" Jen...
Source: FPWR Blog
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Published: June 6 2026 - 08:45 AM
When you’re caring for someone with Prader-Willi syndrome (PWS), you become an expert at navigating complex medical and behavioral needs. But even with the best care, emergencies can still happen. A new study, funded by FPWR and led by Dr. James Luccarelli, examines why individuals with PWS visit...
Source: FPWR Blog
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Published: May 5 2026 - 06:30 AM
