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

December 31, 2021

A special contribution by guest blogger Charlotte Kellar. When Charlotte Kellar’s daughter, Cadence, was diagnosed with Prader-Willi syndrome (PWS) at just four weeks old, she was handed a long list of “cannot”s — things her daughter might never do. But

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

December 20, 2021

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. Click below to watch the

Standards of Care for Children and Adults with PWS

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

December 14, 2021

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. Click below to watch the

FPWR Welcomes Natalie Brenneman to the Team!

November 9, 2021

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

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

November 4, 2021

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 treatment of

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

November 2, 2021

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 Early Check, a flexible framework amenable to screening

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

October 15, 2021

October is Mental Health Screening Month, and we're encouraging our PWS community to learn more about how to identify mental health challenges early. Mental health issues in PWS are a significant challenge for many people with Prader-Willi syndrome. As with

Carbetocin Approval: Your Comment Could Make the Difference

October 14, 2021

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

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

September 29, 2021

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

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