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FPWR Blog

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...

Living Situations for People With PWS Change As They Get Older

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

Introducing PADQ: a New PWS-Specific Measure for Anxiousness & Distress

Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, a new study examining sleep disorders, seizures, and psychiatric behaviors provides a great deal of valuable data and new insights into the relationship betw...

Topics: Research

Sleep Apnea in People with PWS

Is your loved one getting a good night’s sleep? Sleep apnea is a major concern for people with Prader-Willi syndrome, affecting as many as 70% of all participants in the Global PWS Registry.

Topics: Research, Sleep