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Foundation for Prader-Willi Blog | Parents

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Parents Seek Answers, Leaders Step Forward

In January 2008, The Dallas Morning News published an article titled “Parents Seek Answers.” At the center of the story was Kathryn McGhee, a mother navigating the daily realities of Prader-Willi syndrome while also helping shape a growing research m...
May 10, 2026 Read More

Topics: Stories of Hope, Research, Parents, hopefull

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

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

Self-Care for Caregivers: Your Well-Being Matters

Caring for a child or adult with Prader-Willi syndrome (PWS) often means juggling medical appointments, behavior plans, daily routines, and the emotional ups and downs that come with them. Too often, caregivers put their own needs last — not because ...
December 9, 2025 Read More

Topics: Parents

Save the Date for FPWR’s 2026 PWS Family Conference & Workshops

Mark your calendars and join us October 9–10, 2026, as parents, caregivers, and medical professionals from across the country gather in Philadelphia, Pennsylvania for FPWR’s 2026 PWS Family Conference — a two-day event designed to connect, learn, and...
November 25, 2025 Read More

Topics: Research, Parents, Learning

Behavior and Flexibility in PWS: Expert Advice for Families

Behavioral challenges are among the most difficult aspects of Prader-Willi syndrome (PWS). These challenges affect the individual, family, school, and community. Anxiety, rigidity, and difficulty with transitions can make daily life unpredictable and...
November 18, 2025 Read More

Topics: Parents, Behavior

Understanding Swallowing Difficulties and Aspiration in Infants with PWS

Did you know that swallowing issues are extremely common in babies with Prader-Willi syndrome (PWS)? A recent study from Cook Children’s Medical Center (CCMC) in Texas took a closer look—and what they found is something every clinician and parent of ...
July 2, 2025 Read More

Topics: Research, Parents, Children 0-3

Life Satisfaction, Global Health, and Mood in PWS: What a New Study Reveals

The FPWR research team recently published a new study that helps us better understand mood, general health, and life satisfaction in individuals with Prader-Willi syndrome (PWS). The findings are based on data collected through the Global PWS Registr...
June 10, 2025 Read More

Topics: Mental Health, Research, Parents

RareCAP: A New Resource Bringing Expert PWS Care Within Reach

Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy—especially in urgent or emergency situations. That’s why we’re excited to introduce a new tool that puts trusted PWS medical guidance into the hands of those who need it m...
May 19, 2025 Read More

Topics: Resource Development, Parents, Advocacy

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.

Contact Us

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

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

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