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FPWR Blog

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‘The Amount of Love and Light He’s Brought to Our Lives Is Immeasurable’

A special contribution by guest blogger Rebecca Noel On May 25th our beautiful son Bron arrived to our tears of joy. He was so tiny and precious, and needed time in the NICU. He seemed to be making wonderful progress and we were full of hope. We had ...
May 2, 2023 Read More

Topics: Stories of Hope

Schaaf-Yang Syndrome Across the Lifespan [2022 CONFERENCE VIDEO]

In this one hour and 22-minute video, Dr. Christian Schaaf, Department Chair of Human Genetics at Heidelberg University, discusses current research into Schaaf-Yang syndrome (SYS). Click below to watch the video. If you're short on time, scroll down ...
April 25, 2023 Read More

Topics: Research, SYS

Small Community, Big Impact

FPWR’s community is made up of parents like you, determined to make a difference for our loved ones with PWS. Hosting a fundraiser is a meaningful way to support research, and it doesn’t have to take a lot of time or energy. Every event – big and sma...
April 13, 2023 Read More

Possible Link Found Between Erythritol and Risk of Thrombosis

You are probably aware that individuals with PWS have a slightly elevated risk for thrombosis (blood clot formation), with 8.4% of respondents aged 30-61 years reporting a history of one or more in our 2018-2022 survey, compared to <1% in the non-...
April 11, 2023 Read More

Topics: Research

FPWR 2023 Conference Standards of Care

You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO.
April 7, 2023 Read More

Topics: News

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

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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