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PWS Probiotics Research Addresses Constipation, Abdominal Fat and More

January 12, 2021

Two recently released studies represent good first steps to identifying possible uses of probiotic supplementation in PWS. The studies looked at effects of probiotic use on constipation, abdominal fat, fasting insulin and insulin resistance levels, withdrawn/depression symptoms, and attention problems.

Inversago Pharma Receives Rare Pediatric Disease Designation for INV-101 for the Treatment of PWS

January 11, 2021

Inversago Pharma has been granted a Rare Pediatric Disease (RPD) designation by the FDA for the Company’s lead compound, INV-101, for the treatment of Prader-Willi syndrome (PWS). A Phase I study with INV-101 is currently ongoing to evaluate its safety,

FPWR Announces Second Round of 2020 Grant Awards for PWS Research

December 29, 2020

The Foundation for Prader-Willi Research announces our second round of Research Awards in 2020 totaling $666,566. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, has awarded over $15,00,000

Return of Results: Destiny-PWS by Soleno Therapeutics [2020 CONFERENCE VIDEO]

December 28, 2020

In this hour-long video, the CEO of Soleno Therapeutics and researcher Dr. Jennifer Miller go into detail on the design and results of the DCCR phase 3 clinical trial. The session also covers next steps for making the drug available

PWS Registry Data: Impact of COVID-19 on PWS Families [INFOGRAPHICS]

November 23, 2020

Originally published in August 2020, this blog has been updated with significant new data. The Global PWS Registry launched a survey this summer to capture the impact of COVID-19 on PWS families, and how our community is navigating this unprecedented

Seeing What Can Be: Branden’s Story

November 16, 2020

A special contribution by guest blogger Joni Augustine. When Branden was born 30 years ago, there weren’t nearly as many resources or support networks for families affected by Prader-Willi syndrome (PWS). Doctors told me he would never walk and that

Adenotonsillectomy as a Treatment for Obstructive Sleep Apnea in PWS

October 28, 2020

High quality sleep is essential to a child’s growth and development. Obstructive sleep apnea (OSA) occurs when the muscles in the airway relax during sleep, causing a narrowing or closure of the airway, with temporary interruptions of breathing and sleep

I’ve Spent My Life Preparing For This: PWS Mom Shares Sources of Strength

October 26, 2020

Jacquelyn first shared her experience through our Stories of Hope questionnaire. What emerged was a powerful portrait of resilience—hers, and her daughter’s. From the beginning, her daughter has exceeded expectations. She has met milestones, faced challenges head-on, and continued to

Comparison - Angelman, Dupe15q, Prader-Willi syndromes

November 15th Is International 15q Day

October 22, 2020

Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes. Prader-Willi, Angelman, and Dup15q syndromes are all distinct neurodevelopmental disorders that are caused by changes within

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