Foundation for Prader-Willi Blog (24)

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

How to Identify Mental Health Challenges in Your Loved One with PWS

October is Mental Health Screening Month, and we're encouraging our PWS community to learn more about how to identify mental health challenges early.

October 15, 2021 Read More

Topics: Research

Carbetocin Approval: Your Comment Could Make the Difference

Would you like to be part of our community-wide effort to advocate for new treatments for PWS? The FDA is now accepting comments from the public regarding a new drug application currently under review for LV-101 (intranasal carbetocin), a potential t...

October 14, 2021 Read More

Topics: News, Research

Hyponatremia In PWS Is Rare But Fluid Intake Should Still Be Monitored

Hyponatremia is a condition where the sodium (salt) levels in the body are too low. If sodium levels get low enough, the person may become confused, experience a seizure, or even slip into a coma and (rarely) die. A few cases of hyponatremia due to e...

September 29, 2021 Read More

Topics: Research

PATH for PWS Data Supports Positive Findings From DCCR Trial

Data from the PATH for PWS study, an ongoing natural history study of individuals with PWS sponsored by the Foundation for Prader-Willi Research, supports the benefits observed in the open-label study (C602) of DCCR. Analysis of trial data has shown ...

September 14, 2021 Read More

Topics: Research

FDA Advisory Committee to Review Carbetocin (LV101) as PWS Treatment

Levo Therapeutic’s New Drug Application (NDA) for carbetocin as a treatment for PWS has been scheduled for a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held on November 4th, 2021. The Food and Drug Administration (FDA) c...

September 10, 2021 Read More

Topics: Research

FPWR Blog

Categories

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

FPWR Welcomes Natalie Brenneman to the Team!

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

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

How to Identify Mental Health Challenges in Your Loved One with PWS

Carbetocin Approval: Your Comment Could Make the Difference

Hyponatremia In PWS Is Rare But Fluid Intake Should Still Be Monitored

PATH for PWS Data Supports Positive Findings From DCCR Trial

FDA Advisory Committee to Review Carbetocin (LV101) as PWS Treatment

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