Foundation for Prader-Willi Blog (21)

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

Unique MAGEL2 Findings Point to Potential PWS and SYS Genetic Therapy

Dr. Rachel Wevrick and her team have just published a new paper looking at the function of the protein encoded by the MAGEL2 gene, one of the genes in the PWS region of chromosome 15. This is the first-ever study to look at the first part of MAGEL2. ...

September 9, 2021 Read More

Topics: Research

PWS Registry Added 208 Participants In Past Year [INFOGRAPHIC]

The Global PWS Registry continues to grow and strengthen as a valuable resource and research tool for the PWS community. The Registry currently has 1,846 participants. Over the past 12 months (July 2020-July 2021), the Registry has grown by over 12% ...

September 2, 2021 Read More

Topics: Research

Grandma Takes One SMALL Step for PWS Research

A special contribution by guest blogger Diane Schantin When Austin was born, our whole family was up at the hospital celebrating. I vividly remember the nurses coming in to check his vitals, watching their faces and hearing, “Oh my God.” His blood su...

August 26, 2021 Read More

Topics: Stories of Hope

New Paper Provides Data on Vision Problems in People with PWS

Thanks to the participation of so many in our community, our team was able to share the largest study ever on eye problems in PWS, using data from the Global PWS Registry. The paper “Incidence of strabismus, strabismus surgeries, and other vision con...

August 16, 2021 Read More

Topics: Research

FPWR Blog

Categories

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

Unique MAGEL2 Findings Point to Potential PWS and SYS Genetic Therapy

PWS Registry Added 208 Participants In Past Year [INFOGRAPHIC]

Grandma Takes One SMALL Step for PWS Research

New Paper Provides Data on Vision Problems in People with PWS

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