Foundation for Prader-Willi Blog

Why I Will Always Celebrate the Beauty of My Son’s Rareness

A Rare Disease Day Tribute by Rebecca McWilliams, Mom to Kieran In my wildest dreams, I never thought this day would hold such profound meaning for me. Yet when your beautiful child is born and swiftly diagnosed with a disorder that randomly affects ...

February 18, 2026 Read More

Topics: Stories of Hope

PWS Registry Data: 70% Report Sleep Issues In PWS

Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep-related issue, sleep challenges not only affect the individual with PWS but the entire family. T...

February 12, 2026 Read More

Topics: Research

Aardvark Therapeutics Expands HERO Trial Eligibility

Aardvark Therapeutics has announced an update to its Phase 3 HERO trial that will allow more children and families affected by Prader-Willi syndrome to participate.The trial evaluating ARD-101 will now allow children as young as 7 years old to enroll...

February 11, 2026 Read More

Topics: News

A Grandmother’s Hope: Whitnee’s Story

My granddaughter, Whitnee, arrived eight weeks early, and from the very beginning, her journey was anything but ordinary.

February 9, 2026 Read More

Topics: Stories of Hope

Anxiety and Repetitive Behaviors in PWS: Understanding the Cycle and Ways to Help

This blog is based on the presentation “Managing Repetitive Behaviors & Improving Motivation,” given by Elizabeth Roof.

February 4, 2026 Read More

Topics: Parents, Behavior

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

While much of FPWR’s work starts with discovery research, our mission extends across the full drug development pathway, supporting progress from foundational science all the way to potential treatments for Prader-Willi syndrome (PWS).

January 26, 2026 Read More

Topics: News

The PWS Clinical Investigation Collaborative (PWS-CLIC): Advancing Care for Your Loved Ones

If your loved one has Prader-Willi syndrome (PWS), you know how important expert medical care is to managing the complexities of the condition. The good news is that a dedicated group of doctors has partnered with FPWR to create a nationwide network ...

January 22, 2026 Read More

Topics: Resource Development

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Excessive daytime sleepiness (EDS) is one of those symptoms of Prader-Willi syndrome (PWS) that often does not get the attention it deserves. EDS can profoundly undermine success in older children and adults with PWS. It is hard to learn anything in ...

January 15, 2026 Read More

Topics: Therapeutic Development, Research, Research Blog, Sleep

Pivotal Study Results of VYKAT™ XR Published

Soleno Therapeutics has published results from its pivotal Phase 3 clinical study of VYKAT™ XR (diazoxide choline extended-release tablets, DCCR) in The Journal of Clinical Endocrinology and Metabolism, a peer-reviewed journal for endocrine and metab...

January 12, 2026 Read More

Topics: News

FPWR Blog

Categories

Why I Will Always Celebrate the Beauty of My Son’s Rareness

PWS Registry Data: 70% Report Sleep Issues In PWS

Aardvark Therapeutics Expands HERO Trial Eligibility

A Grandmother’s Hope: Whitnee’s Story

Anxiety and Repetitive Behaviors in PWS: Understanding the Cycle and Ways to Help

The FPWR Therapeutic Accelerator Program: Bridging Research and Development

The PWS Clinical Investigation Collaborative (PWS-CLIC): Advancing Care for Your Loved Ones

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Pivotal Study Results of VYKAT™ XR Published

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