Foundation for Prader-Willi Blog

FPWR

From the NICU to Hosting a Walk for Prader-Willi Syndrome Research

For lack of a better phrase to emphasize the heaviness and intensity of the beginning: those days were hard.

April 3, 2026 Read More

A Grandmother’s Love: Showing Up for Miles and the PWS Community

When our family learned that Miles had Prader-Willi syndrome, everything changed. I had never heard of PWS before, and I was in shock. I was scared and heartbroken for Josh and Carolyn. All I could think was, What are we going to do?

March 28, 2026 Read More

Topics: Stories of Hope, hopefull

When the Well-Being of Caregivers is Supported, Everyone Benefits

Parents of children with Prader-Willi syndrome don’t need to be told that caregiving is hard — you live it every day. You juggle medical complexity, behavioral challenges, constant vigilance around food, and the emotional weight of advocating for you...

March 25, 2026 Read More

Topics: Mental Health, Research

New Study Opportunity for Prader-Willi Syndrome: Now Enrolling RM-718

A new clinical study is now enrolling individuals with Prader-Willi syndrome (PWS), offering families the opportunity to explore a potential new treatment for obesity and hyperphagia.

March 5, 2026 Read More

Topics: News, Clinical Trials Opportunities

The Impact of Sleep on Behavior and Mental Health in PWS

Sleep challenges affect more than 70% of individuals with Prader-Willi syndrome (PWS). Excessive daytime sleepiness, disrupted nighttime sleep, altered REM patterns, and sleep-disordered breathing all contribute to a complex sleep profile that affect...

March 3, 2026 Read More

Topics: Mental Health, Behavior

Aardvark Therapeutics Announces Voluntary Pause of Hero Clinical Trial

SAN DIEGO, Feb. 27, 2026 (GLOBE NEWSWIRE) -- Aardvark Therapeutics, Inc. (Aardvark) (Nasdaq: AARD), a clinical-stage biopharmaceutical company focused on developing novel, small-molecule therapeutics to activate innate homeostatic pathways for the tr...

February 27, 2026 Read More

Topics: News

The Global PWS Registry: Turning Lived Experience Into Better Care

Families living with Prader-Willi syndrome are changing how PWS is understood, studied, and treated.

February 24, 2026 Read More

Topics: News, Research, Parents

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