Behind every One Small Step is an unsung hero. Following up with one more sponsor. Filling prize baskets at the kitchen table. Wondering if anyone will actually show up. Arriving before sunrise to unload tables. Most people never see those moments. Today, we're celebrating the people who've been...
Source: FPWR Blog
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Published: September 9 2026 - 05:45 AM
Researchers are increasingly focusing on cognition in Prader-Willi syndrome (PWS), including attention, memory, planning, and flexible thinking. FPWR recently convened international experts to identify the best ways to measure cognitive improvements and prepare for future clinical trials of...
Source: FPWR Blog
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Published: August 8 2026 - 06:30 AM
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
