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Foundation for Prader-Willi Blog | Research (8)

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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

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 ...
October 28, 2022 Read More

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...
October 18, 2022 Read More

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.
October 17, 2022 Read More

Topics: Research, Sleep

Visiting PWS Researchers Inspires Hope

A special contribution by guest blogger Lisa Matesevac This summer, my family made our annual 15-hour trek to visit family in Buffalo, NY. This was a much-needed reprieve for our family as Evan, our teenage son with PWS, was recovering from recent sp...
September 13, 2022 Read More

Topics: Research

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

Temper outbursts are a common challenge for many people with Prader-Willi syndrome. The published study "The characteristics of temper outbursts in Prader-Willi syndrome" sheds light on temper outbursts in PWS. Drs. Rice, Einfeld and Woodcock, all ve...
August 11, 2022 Read More

Topics: Research

Learnings from the Global PWS Community at the 2022 IPSWO Conference

In July 2022, FPWR’s Executive Director Susan Hedstrom, Director of Research Programs Theresa Strong, and Lauren Schwartz, FPWR’s leader of the Mental Health & Behavior Research Programs, attended the International Prader-Willi Syndrome Organisat...
August 8, 2022 Read More

Topics: Research

2022 PWS Research Symposium and Family Conference

This September 29 - October 1, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Fam...
August 6, 2022 Read More

Topics: Research, Parents, Learning

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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