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Foundation for Prader-Willi Blog | Research (2)

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How Should I Talk with My Child About Their PWS Diagnosis?

How should I talk with my child about their PWS diagnosis? This is a question many parents ask as their child grows and differences between them and their typical peers may become more apparent. Will discussing the PWS diagnosis empower their child t...
November 7, 2024 Read More

Topics: Research

2024 FPWR PWS/SYS Research Symposium Retrospective

In September, we were honored to host our annual meeting of researchers, physicians, and pharmaceutical companies interested in Prader-Willi or Schaaf-Yang syndromes. This event is consistently invigorating as the leaders in PWS/SYS research not only...
October 30, 2024 Read More

Topics: Research, Learning

New Study Highlights the Severe Impact of COVID-19 for Individuals with PWS

As the COVID-19 pandemic continues to evolve, researchers are working hard to understand how the virus affects individuals with Prader-Willi syndrome (PWS). A recent study by FPWR Grant Recipient Dr. James Luccarelli and colleagues from the Massachus...
September 19, 2024 Read More

Topics: Research

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics' DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency'...
September 3, 2024 Read More

Topics: Research

Exploring Type I and II Deletions in Prader-Willi: Cell-Level Insights

70% of cases of Prader-Willi syndrome are associated with a “deletion” of 5,000–6,000 missing base pairs (bp) of DNA on the paternally inherited copy of chromosome 15. What are the biological consequences of the larger 6,000-bp deletion (typically ca...
August 20, 2024 Read More

Topics: Genetics and Imprinting, Research

Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

If your loved one with PWS struggles with daytime sleepiness, you may be interested in learning more about TEMPO, a phase 3 study of Pitolisant, now enrolling volunteers with PWS ages 6 to 65 years old. This study will evaluate the efficacy of Pitoli...
June 18, 2024 Read More

Topics: Research

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

Prader-Willi syndrome (PWS) is a complex genetic disorder with a range of challenging symptoms, including hyperphagia (excessive hunger), obesity, and behavioral issues. Despite these challenges, recent advancements in medical research and therapeuti...
June 13, 2024 Read More

Topics: Research

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the PW...
May 27, 2024 Read More

Topics: Resource Development, Research, Parents

FPWR Announces 1st Round of 2024 Grants

We are pleased to announce the recipients of our first round of grants for 2024, totaling more than $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and ...
May 15, 2024 Read More

Topics: Research, SYS

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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