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Foundation for Prader-Willi Blog | News

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Harvesting Hope 2025: Walk, Run, or Shake Your Tailfeather

Ready to put purpose in your steps? The Harvesting Hope Distance Challenge is back starting October 16! Whether you walk, run, or waddle, every step funds critical research for Prader-Willi and Schaaf-Yang syndromes. And the best part? Thanks to a ge...
October 7, 2025 Read More

Topics: News

Welcoming Karla Blair and Nicci Peterson to the FPWR Team

We’re excited to introduce two new members of the FPWR team: Karla Blair and Nicci Peterson! As parents, advocates, and passionate members of the PWS community, Karla and Nicci bring heartfelt commitment and a personal perspective to our work. Their ...
August 12, 2025 Read More

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The FPWR Therapeutic Accelerator Program: Bridging Research and Development

Much of the research supported by FPWR is considered “basic science” or “discovery” research. The goal of these projects is to make measurements and collect data that define Prader-Willi syndrome (PWS) and advance our understanding of the molecular b...
April 24, 2025 Read More

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May is #PWSAwareness Month!

Each May, our community comes together to shine a light on Prader-Willi syndrome and accelerate the research that is driving new treatments and transforming lives. Since 2010, PWS Awareness Month has mobilized families, advocates, and allies across t...
April 22, 2025 Read More

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DCCR (VYKAT XR) Approved for Treating Hyperphagia in Prader-Willi Syndrome

We are thrilled to share that the FDA has approved the first treatment for hyperphagia (excessive hunger) in individuals with Prader-Willi syndrome (PWS). VYKAT XR (previously referred to as DCCR) is now approved for adults and children 4 years of ag...
March 26, 2025 Read More

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Harvesting Hope: Trot With Us To Make a Difference!

This fall, join us for a heartwarming and impactful challenge: Harvesting Hope—a fun, family-friendly distance challenge that supports Prader-Willi and Schaaf-Yang syndrome research.
October 3, 2024 Read More

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FDA Grants Rare Pediatric Disease Designation to CSTI-500

The FDA has granted Rare Pediatric Disease Designation (RPDD) to ConSynance Therapeutics' new investigational drug, CSTI-500 for the treatment of Prader-Willi Syndrome in children and adolescents. This special status is granted to drugs and biologics...
July 26, 2024 Read More

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FPWR Joins the Rare Disease Diversity Coalition

Improving diversity, equity, inclusion, and accessibility (DEIA) in PWS clinical research is a priority for FPWR, and we are working to partner with experts and other patient groups working in this area. FPWR has recently joined the Rare Disease Dive...
July 2, 2024 Read More

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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

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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.

Contact Us

Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

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