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Foundation for Prader-Willi Blog | Stories of Hope

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Team FPWR Takes on the 2026 TCS New York City Marathon

This year’s Team FPWR roster is something special. Our 2026 runners come from all over the country and are running for daughters, cousins, sisters, friends, nieces, and aunts impacted by Prader-Willi syndrome and Schaaf-Yang syndrome. Among them is a...
June 10, 2026 Read More

Topics: Stories of Hope, PWS People

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

HopeFULL Highlights: Unlocking What’s Possible

May is PWS Awareness Month. It’s a time to better understand Prader-Willi syndrome and to see what’s possible. In this edition of HopeFULL Highlights, three families share what makes their loved ones remarkable, including recent milestones and the mo...
May 6, 2026 Read More

Topics: Stories of Hope

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

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

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

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

Dream, Believe, Achieve

I’m a mom, so you know my memory is full of as many holes as Swiss cheese. I can’t remember much of anything that took place more than 5 years ago. On particularly fine days, I may be lucky to remember something that was said within the past 5 minute...
January 5, 2026 Read More

Topics: Stories of Hope

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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