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FPWR Blog

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.

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...

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...

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...

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.

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...

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...

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...

Topics: Research

FPWR Announces Funding of $1.8M for Research Grants

The Foundation for Prader-Willi Research announces our second round of Research Awards in 2022, exceeding $1,800,000. Representing the largest single round of funding in FPWR history, we are excited to fund a robust group of 14 grants that encompass ...

Topics: Research