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FPWR Blog

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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

Topics: Stories of Hope, hopefull

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

Growing Into Independence: Emma’s Journey Continues

It’s been quite a journey since I first wrote about Emma for FPWR. In the years since, she has moved through many milestones, each one bringing its own mix of challenge, growth, and pride.
March 23, 2026 Read More

Topics: Stories of Hope

Top 10 Reasons to Attend the 2026 FPWR Prader-Willi Syndrome Conference in Philadelphia

Join us October 9–10 in Philadelphia for the annual FPWR Family Conference, a unique gathering dedicated to families and professionals affected by Prader-Willi syndrome. Over two powerful days, leading researchers, clinicians, and families from aroun...
March 18, 2026 Read More

Topics: News

PWS Registry Data: Dermatology

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS.
March 16, 2026 Read More

Topics: Research, Global PWS Registry

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

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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