Foundation for Prader-Willi Blog

FPWR

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

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) ...

August 19, 2026 Read More

Topics: News, Endocrinology/Growth Hormone

Balancing Benefit, Risk, and Access to VYKAT XR

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.

August 17, 2026 Read More

Topics: News, Treatments

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

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 edem...

August 11, 2026 Read More

Can We Improve Cognition in People with Prader-Willi Syndrome?

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 ...

August 5, 2026 Read More

Topics: Research, Clinical Trials, cognition, Executive Function

When the Impossible Becomes Everyday: A PWS Story

By Guest Blogger Tammy Galloway I have started this story many times, and each time I find myself focusing on different parts of our journey. In the early days, doctors told us what my son Kyle would likely never do. They told us what to expect, and ...

July 24, 2026 Read More

Topics: Stories of Hope

From “What If?” to “What’s Next?”

Bath time has just finished, and the sun is setting. Our daughter’s nightly routine is about to begin. What may be bath and story time for most families is just the beginning for us.

July 10, 2026 Read More

Topics: Stories of Hope

How Pretend Play Helps Children with PWS Build Social Skills

Many parents wonder how to help their child build friendships, understand emotions, and navigate everyday social situations. One powerful—and often overlooked—tool is pretend play. In this blog, guest contributor Rachel Gordon from the Neurodevelopme...

July 1, 2026 Read More

Topics: Behavior

How Two Moms Turned Fear Into Action Through One Small Step

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?” Li...

June 26, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

Six-Month Setmelanotide Data Show Benefits in PWS

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 ...

June 16, 2026 Read More

Topics: Research, Clinical Trials, PWS Research, Hyperphagia, Trial Results

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Recent Posts

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

Balancing Benefit, Risk, and Access to VYKAT XR

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

Can We Improve Cognition in People with Prader-Willi Syndrome?

When the Impossible Becomes Everyday: A PWS Story

From “What If?” to “What’s Next?”

How Pretend Play Helps Children with PWS Build Social Skills

How Two Moms Turned Fear Into Action Through One Small Step

Six-Month Setmelanotide Data Show Benefits in PWS

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