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FPWR Blog

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'It’s a Beautiful Gift I Never Expected' Says SYS Hero and Mom

A special blog contribution from Roya Malaekeh. People often ask what it was like getting a diagnosis, especially since we had endured a year without one. When I got that phone call from the geneticist, it felt like a boulder was lifted off my chest ...
July 13, 2023 Read More

Topics: Stories of Hope

The Comer Family Is “Eager to Meet You” in Denver This October!

A special contribution by guest blogger Andrew Comer The 2022 FPWR Family Conference in Chicago was an important turning point for our family. Our daughter Lucy had been born only six months prior, and diagnosed with PWS a month after that. My wife S...
June 20, 2023 Read More

Topics: Parents

'She Gets Stronger Every Day' Says SYS Mom Inspired by Daughter

A special blog contribution from Stephanie McDade. Last week Gibson rode a tricycle. She pedaled and steered on her own for a good five minutes on the sidewalk of our city block. This is real progress for a 8-year-old who doesn’t walk independently a...
June 6, 2023 Read More

Topics: Stories of Hope

‘He Shows Me Everyday What a True Superhero Looks Like’ Says PWS Mom

A special contribution by guest blogger Heather Osterman. Max came into the world with a bang...or more accurately, a limp body, not breathing, and blue. I went from being induced, since Max was quite cozy where he was, to a long labor, to an emergen...
May 31, 2023 Read More

Topics: Stories of Hope

New Venture Philanthropy Investment: Palobiofarma

The Foundation for Prader-Willi Research (FPWR) has provided a new venture philanthropy award, in the form of a convertible loan, to Palobiofarma S.L., a Spanish biopharmaceutical company focused on developing innovative treatments for serious diseas...
May 4, 2023 Read More

Topics: News

'She Is Tough, She Is a Fighter' Says PWS Mom Inspired by Daughter

A special blog contribution from Krysten Leighty. Krysten shared her story via our Stories of Hope Questionnaire.
March 2, 2023 Read More

Topics: Stories of Hope

Standards of Care for People with PWS [2022 Conference Video]

In this one-hour video, Dr. Diane Stafford, Pediatric Endocrinologist at Stanford University, discusses standards of care for patients with PWS across the age continuum, including medical needs, currently available medications, supplements, and behav...
December 15, 2022 Read More

Learnings from the Global PWS Community at the 2022 IPSWO Conference

In July 2022, FPWR’s Executive Director Susan Hedstrom, Director of Research Programs Theresa Strong, and Lauren Schwartz, FPWR’s leader of the Mental Health & Behavior Research Programs, attended the International Prader-Willi Syndrome Organisat...
August 8, 2022 Read More

Topics: Research

‘Most exceptional human being that I know’: Mom Inspired by Son with PWS

A special contribution by guest blogger Rebecca Krylow. Rebecca shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Joey is truly the most exceptional human being that I know. He is kind; considerate...
May 4, 2022 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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