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FPWR Blog

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What's Happening in PWS Research [2022 Conference Video]

In this one hour and 17-minutevideo, Dr. Theresa Strong and the FPWR research team explore recent research breakthroughs and emerging standards of care for PWS.
January 11, 2023 Read More

Topics: Research

Watching for Mental Health Issues

Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares how to identify and treat serious mental health issues in our loved ones with PWS.
January 5, 2023 Read More

Topics: Research

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

New Gene Therapy Approach Improves Metabolic Function and Behavior in Mouse Model of PWS

A recently published paper explores a novel gene therapy approach for PWS, delivering a ‘growth hormone’ for brain cells, called brain-derived neurotrophic factor (BDNF). The study, Hypothalamic AAV-BDNF gene therapy improves metabolic function and b...
December 7, 2022 Read More

PWS Registry Data: Living Situations for People With PWS Change As They Get Older [INFOGRAPHIC]

As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registr...
December 2, 2022 Read More

A Message From FPWR's Newest Research Team Member: Lisa Burnett

Hello FPWR friends! I’m Lisa Burnett and I am thrilled to share that I’ve recently joined the FPWR team. I’d love to share a little bit about myself so that you all can get to know me.
December 1, 2022 Read More

Topics: News

Advancing Hope: New Therapies for PWS [2022 Conference Video]

In this 50‑minute video, Dr. Tony Holland, Dr. Lauren Schwartz, and Dr. Deepan Singh discuss two promising studies of therapies for Prader-Willi syndrome: Vagus Nerve Stimulation (VNS) and bright light therapy. The session includes Q&A from parti...
November 29, 2022 Read More

Topics: Research

PWS Early Interventions: 5 Therapies for Prader-Willi Syndrome

The time immediately following a diagnosis of PWS can be very difficult, and parents typically are dealing with an overwhelming amount of new information. It's important to take the time you need to process what is happening and connect with others f...
November 22, 2022 Read More

Topics: Research

Harmony Biosciences Announces Topline Results From Phase 2 Pitolisant Study

Today, Harmony Biosciences announced topline data on the primary outcome, excessive daytime sleepiness, from their Phase 2 proof-of-concept trial in patients with Prader-Willi syndrome, or PWS. The study included 65 volunteers, ages 6 to 65, who were...
November 1, 2022 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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Covina, CA 91723

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