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FPWR

FPWR Receives 2026 NORD Rare Impact Award

September 30, 2026

The Foundation for Prader-Willi Research has received the Abbey S. Meyers Leadership Award as part of the 2026 NORD Rare Impact Awards for its Global PWS Registry research. We’re honored by NORD’s recognition and deeply grateful to the families who

Featured image collage of Team FPWR marathoner Finn Schneider, an athlete living with Prader-Willi syndrome. The graphic includes action photos of Finn running races, relaxing with his black service dog Toby, and smiling at an IRONMAN event. A navy banner across the bottom reads “Finn Schneider — Athlete with PWS | Running NYC 26.2 alongside the Team FPWR running icon.

Meet Marathoner Finn Schneider: Redefining What’s Possible

September 23, 2026

Finn Schneider has been running for most of his life. As a kid, he eagerly signed up for races, always wanting to go farther, faster, longer. He ran cross country in middle school, high school, and even for a year

Graphic reading “Constipation in PWS” with the subtitle “New research reveals signs families should know” on a blue background.

Constipation in PWS: New Research Highlights What Parents Should Know

September 9, 2026

Constipation is a common concern for people with Prader-Willi syndrome (PWS), but until now, there has been very little research describing how often it occurs or what it looks like in children and young adults with PWS. A new study

Built to Last: Celebrating One Small Step Legacy Hosts

September 3, 2026

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

Newborn baby sleeping in a hospital bassinet, swaddled in a blanket with a feeding tube secured to their cheek.

New Neonatal Caregiver Survey Now Available in the Global PWS Registry

September 2, 2026

The first days and weeks after a baby is born can be overwhelming for any family. For families of babies with Prader-Willi syndrome (PWS), those early days may come with additional challenges - including feeding difficulties, an unexpected diagnosis, time

Graphic announcing “A Letter to the PWS Community from Neurocrine Biosciences,” featuring a preview of the Neurocrine letter and FPWR and Neurocrine logos.

Neurocrine Biosciences Shares Letter with the PWS Community

September 1, 2026

Neurocrine Biosciences has shared a letter with the Prader-Willi syndrome (PWS) community. Earlier this year, Neurocrine Biosciences acquired Soleno Therapeutics and became the new steward of VYKAT® XR (diazoxide choline) extended-release tablets. Kyle Gano, CEO of Neurocrine, has shared a

Graphic reading “Research Update: Once-Weekly Growth Hormone?” with supporting text noting a new study raises questions about BMI and what once-weekly GH could mean for PWS.

New Study Raises Questions About Long-Acting Growth Hormone for People with PWS

August 19, 2026

For decades, daily growth hormone injections have been an important part of care for people with Prader-Willi syndrome (PWS), helping improve growth, body composition, muscle mass, and overall health. More recently, long-acting growth hormone (LAGH) formulations have been developed to

Balancing Benefit, Risk, and Access to VYKAT XR

August 17, 2026

As the PWS community gains more real-world experience with VYKAT XR, important conversations are taking place about how to balance the medication’s potential benefits with known risks. FPWR believes both deserve careful consideration. Recent reports of 7 deaths and more

Graphic reading “Clinician Guidance: VYKAT XR Safety Considerations for Real-World Use,” with supporting text about risk factors, monitoring, and treatment safety.

VYKAT XR: Clinician Recommendations for ‘Real World’ Use and Monitoring Side Effects

August 11, 2026

Since VYKAT XR became available in March 2025, our community has begun to gain valuable real-world experience using the medication. As expected with any newly approved therapy, new safety information continues to emerge. This includes reports of edema (fluid retention),

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