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FPWR Blog

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Harmony Biosciences releases a statement to the PWS Community

A recent report from Scorpion Capital, a financial research group that specializes in 'activist short selling', makes several allegations about potential side effects of the drug Wakix (pitolisant), which is currently being evaluated in a clinical tr...
March 29, 2023 Read More

Topics: Advocacy

Managing Behavior and Mental Health [2022 CONFERENCE VIDEO]

In this one hour and 9-minute video, Elizabeth Roof, Dr. Lauren Schwartz, and Dr. Deepan Singh explore behavior strategies and mental health issues in people with PWS.
March 23, 2023 Read More

Topics: Mental Health, Behavior

A Link Between Exercise Motivation and the Gut Microbiome

Do you ever wonder why you’re so strongly motivated to exercise while it seems that some others inexplicably aren’t? The answer may lie in the differences between your gut microbiomes! Nature, the world’s leading multidisciplinary science journal, re...
March 7, 2023 Read More

Topics: Research

PWS Registry Data: Mental Health Therapies [INFOGRAPHIC]

As a rare disorder, PWS is most well-known to the medical community and general population for hyperphagia, or intense food-seeking behavior. However, family members, caregivers, and individuals with PWS know that behavior difficulties and mental hea...
March 6, 2023 Read More

Topics: Research

'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

Medical Devices Offer New Opportunities to Alleviate Symptoms of PWS

FPWR is investigating several devices that have been proven effective in treating a myriad of symptoms associated with other medical conditions & have considerable potential to relieve symptoms of PWS. Devices offer many advantages including an e...
February 22, 2023 Read More

Topics: Research

Orthopedic Challenges and Treatments in PWS [2022 CONFERENCE VIDEO]

In this 2-hour and 2-minute video, Dr. Harold van Bosse, a pediatric orthopedic surgeon at SSM Health/Saint Louis University/Cardinal Glennon Children’s Hospital, and Dr. Nora Wagner, an APTA board certified pediatrics clinical specialist, discuss or...
February 21, 2023 Read More

Topics: Therapeutic Development

Top 10 Reasons to Attend the 2023 Family Conference

Join us October 6-October 7 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference! Here are the top 10 reasons you need to be there:
February 14, 2023 Read More

Topics: News, SYS

Global PWS Registry Advisory Board Changes

The Global PWS Registry launched in 2015 as a central repository of caregiver and patient entered data about living with PWS. The goals of the Registry are to better understand the full spectrum of PWS symptoms, expedite the completion of PWS clinica...
February 9, 2023 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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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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Covina, CA 91723

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