Topics: Research
It is well known that individuals with Prader-Willi syndrome (PWS) display muscle weakness, hypotonia, and decreased lean muscle mass. Those with PWS have a 25–40% decrease in muscle mass compared to non-affected individuals, and muscle strength is a...
Attending a conference means being around people who get it—they understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new...
Topics: News
Being a mom and a psychologist, I have often wondered about the impact of growing up with a person with Prader-Willi Syndrome (PWS) on siblings. There are research studies that indicate that growing up with a sibling with a developmental disability c...
A special blog contribution from our 2023 FPWR Art Auction Participants! Our 2023 Artist of the Year competition was a great success, raising critical funds for PWS research! We extend our heartfelt gratitude to all our extraordinary artists who part...
Topics: Stories of Hope
Aardvark Therapeutics, a clinical stage biopharmaceutical company, has reported receipt of a Rare Pediatric Disease Designation in Prader-Willi Syndrome (PWS) from the FDA for its lead program ARD-101.
Recently, a matching donor came forward, igniting the $25,000 Challenge. Today, we want to introduce you to our generous matcher: Maria.
Topics: Advocacy
Sugar glucose is the body’s primary source of energy. Maintaining a healthy level of glucose in blood (not too high or too low), so that it can be delivered to all the other tissues of the body, is regulated by the hormone insulin. Insulin is produce...
Topics: Research
UPDATE, July 2023: We are currently contracting with potential trial sites across the US and will announce sites as they become available. Our first sites could be available as early as August/September. If you would like to join our interest list fo...
Topics: Research
Harmony Biosciences has announced plans to begin a Phase 3 study of Pitolisant for individuals with Prader-Willi syndrome ages 6 and up in the 4th quarter of 2023. This announcement is made following a positive end-of-phase 2 meeting with the FDA. Ha...