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FPWR Blog

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Encouraging Update from Soleno Therapeutics Regarding DCCR

Soleno Therapeutics has provided an update following recent interactions with the U.S. Food and Drug Administration (FDA) regarding the development of once-daily DCCR (diazoxide choline) extended-release tablets for the treatment of Prader-Willi synd...
January 24, 2022 Read More

Topics: Research

Levo Therapeutics Receives Complete Response from FDA Regarding Carbetocin NDA

Levo Therapeutics, announced today that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) regarding its New Drug Application (NDA) for LV-101 (intranasal carbetocin) as a treatment for hyperphagia, anxi...
January 18, 2022 Read More

Topics: Research

Saniona Initiates Phase 2b Clinical Trial of Tesomet for PWS

Saniona, a clinical-stage biopharmaceutical company focused on rare diseases, has announced the initiation of a Phase 2b clinical trial of Tesomet in patients with Prader-Willi syndrome (PWS).
January 7, 2022 Read More

Topics: Research

Pushing Beyond Her Comfort Zone, PWS Mom Advocates for Child's Future

A special contribution by guest blogger Charlotte Kellar. Charlotte shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Let me count the ways … To doubt your own child is one of the worst feelings in...
December 31, 2021 Read More

Topics: Stories of Hope

Standards of Care for Children and Adults with PWS [2021 CONFERENCE VIDEO]

In this 1-hour video, Dr. Jessica Duis, Clinical Geneticist from Children's Hospital Colorado explains standards of care for children and adults with PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.
December 20, 2021 Read More

Topics: Research

Standards of Care for Children Ages 0-2 With PWS [2021 CONFERENCE VIDEO]

In this 1-hour video, Dr. Jessica Duis, Clinical Geneticist from Children's Hospital Colorado explains standards of care for children ages 0-2 with PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.
December 14, 2021 Read More

Topics: Research

FPWR Welcomes Natalie Brenneman to the Team!

Natalie is a veteran to our community of dedicated movers and shakers and has been involved with our Foundation since the birth of her son in 2015. We are excited to bring her onboard so she can put her talents and experience to use supporting other ...
November 9, 2021 Read More

Topics: News

FDA Committee Indicates Substantial Evidence Has Not Been Provided For the Effectiveness of Carbetocin as a Treatment for PWS

In a disappointing decision, a panel of independent advisers to the Food and Drug Administration has voted 12 to 1 suggesting that Levo Therapeutics has not provided substantial evidence of effectiveness for carbetocin nasal spray (LV-101) in the tre...
November 4, 2021 Read More

FPWR, FAST, ASF, and Dup15q Unite to Fund Newborn Screening Grant

The Foundation for Prader-Willi Research (FPWR), Foundation for Angelman Syndrome Therapeutics (FAST), Angelman Syndrome Foundation (ASF), and Dup15q Alliance announce a collaborative initiative to fund the addition of chromosome 15 conditions to Ear...
November 2, 2021 Read More

Topics: News, 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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Phone: 888-322-5487
Email: info@fpwr.org

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