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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

Dr. Roy, Dr. Shaheed, and Corrie Andrews smiling professionally.

The First Two Years with PWS: Expert Guidance for Families

September 16, 2026

The early years with Prader-Willi syndrome (PWS) come with a lot to learn. For families still finding their footing after a new diagnosis, questions about feeding, growth hormone, sleep, therapies, and specialist visits can come quickly — all while getting

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

PWS Medical Care at Every Age graphic featuring 2026 FPWR Conference speakers Dr. Sani Roy for ages 0–2, Dr. Amy Fleischman for ages 3–9, and Dr. Diane Stafford for teens and adults.

PWS Medical Care at Every Age | 2026 FPWR Conference

August 26, 2026

Medical needs change as people with Prader-Willi syndrome grow, and families often have questions about what to watch for, which specialists to see, and what care should look like at each stage. At this year’s FPWR Family Conference, three experienced

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),

Collage of attendees connecting at the FPWR Family Conference alongside a small-group workshop led by a speaker.

FPWR 2026 Family Conference: Deep Dive Workshops

July 15, 2026

At this year's FPWR Family Conference, you'll find more than traditional presentations. Explore interactive workshops featuring expert guidance, practical strategies, and meaningful conversations with other families. Behavior & Mental Health: Ages 5 and Up Behavioral and mental health challenges can

How Two Moms Turned Fear Into Action Through One Small Step

June 26, 2026

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

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