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FPWR Blog

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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

Early School Years — Ages 3-8 [2023 Conference Video]

In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS.
June 5, 2024 Read More

Topics: ages: 4-7, Parents, Children 3-6, Children 6-12, Family Conference

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

Recent Advances in Drug Development Bring Treatments Within Reach for PWS

Exciting developments are sweeping through the PWS community, spotlighting two potential treatments: Soleno’s DCCR and Aardvark’s ARD-101. Recognition of the PWS community's involvement must be given, as hundreds of volunteers have participated in PW...
May 21, 2024 Read More

Topics: News

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, Schaaf-Yang Syndrome

Advancing Prader-Willi Syndrome Care With the PWS Profile

Prader-Willi syndrome (PWS) impacts many parts of our children’s lives. While the hallmark challenge is hyperphagia—an uncontrollable, excessive appetite—there’s much more beneath the surface. Children and adults with PWS often face behavioral and em...
May 13, 2024 Read More

Topics: News, Resource Development, Research

Sharing Strength for PWS Awareness Month

May marks Prader-Willi Syndrome (PWS) Awareness Month, shedding light on the complex genetic disorder that brings various challenges to individuals. However, it's important to remember that PWS doesn't define the incredible individuals living with it...
May 7, 2024 Read More

Topics: Stories of Hope

Clinical Trials Panel [2023 Conference Video]

In this one hour and 8-minute video, Dr. Theresa Strong, FPWR’s Director of Research Programs, explores PWS clinical trials that are already underway or enrolling participants.
April 23, 2024 Read More

Topics: Research, Clinical Trials, Family Conference

PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry patch of skin, an ...
April 9, 2024 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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440 N Barranca Ave #3620
Covina, CA 91723

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