Category: Awareness

It’s Teacher Appreciation Week!

Contributed by PWSA | USA Family Support Director Stacy Ward Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you?  I know I would not be.  I considered being a teacher – who does not love the idea of getting out of work by three...

The 2022 Giving Challenge is now LIVE!

The Giving Challenge starts TODAY (April 26, 2022) at 12:00 p.m. EST, and we need YOU to help us make the most of this incredible matching gift opportunity! Thanks to The Patterson Foundation, every gift made from noon today until noon tomorrow (April 27, 2022) will be DOUBLED up to $100. That means your gift...

Hyperphagia and How it Affects Learning

Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...

National Siblings Day: Joe Gill

April 10, 2022 is National Siblings Day, a day where we take the opportunity to celebrate and recognize the amazing siblings in our PWS community. One sibling in particular is going above and beyond to raise awareness and funds for our rare disease community. Joe Gill, 22, will be running in the upcoming Boston Marathon...

Lawmakers Review Several Legislative Proposals Intended to Accelerate Innovation of Therapies, Including STAT Act

On Thursday, March 17th, the House Energy & Commerce Subcommittee on Health held a hearing regarding The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight. This hearing explored a number of legislative proposals intended to accelerate innovation of therapies, while ensuring appropriate levels of oversight, including H.R. 1730, the Speeding Therapy Access Today...

PWSA | USA CEO Paige Rivard Participating in Webinar Alongside U.S. Representatives Ahead of Rare Disease Day

As the nation gets ready for Rare Disease Day on February 28, 2022, PWSA | USA CEO Paige Rivard will participate in a national webinar hosted by Harmony Biosciences on Thursday, February 24th at 1pm EST to discuss COVID-19 and Rare Disease Patients. Paige will join U.S. Representative Josh Gottheimer (D-NJ), U.S. Representative Brad Wenstrup...

Brain Tissue Donation: Honoring Loved One’s Through Hope

Autism BrainNet is a program of the Simons Foundation Autism Research Initiative (SFARI) that promotes innovative, high-quality research on postmortem brain tissue to improve the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental conditions. We work with Autism BrainNet to promote a greater knowledge of neurodevelopmental conditions and brain tissue research,...

Radius Health Shares Information about its Drug RAD011, Upcoming Study in New Fact Sheet

January 24, 2021 -- Radius Health, Inc. recently unveiled a detailed fact sheet about its drug RAD011, a synthetic cannabidiol oral solution, which is being studied as a possible treatment for hyperphagia and related behaviors in Prader-Willi syndrome. The fact sheet also gives a description of Radius Health's upcoming SCOUT-015 clinical trial. According to Radius...

Soleno Therapeutics Provides Update on DCCR

January 24 ,2022 -- PWSA| USA is sharing the most recent news released on the status of Soleno Therapeutics' drug DCCR (diazoxide choline) for the treatment of Prader-Willi syndrome. Soleno announced today that it has received the official minutes from a December 2021 meeting with the FDA's Division of Psychiatry. This meeting was a follow...

Saniona Launches TM006 Study Website to Advance Testing Efforts for Tesomet, a Drug to Help Individuals with PWS Feel Less Hungry

Following Saniona’s announcement that the company is initiating its Phase 2b clinical trial for Tesomet, which is being studied as a treatment for hyperphagia in Prader-Willi syndrome, the company has launched a website to help advance testing efforts for the drug. If you would like to participate in PWS research for Saniona’s TM006 study, this...

Join PWSA | USA, FPWR in Combined Community Conversation to Discuss FDA Advisory Committee’s Decision on LV-101 Carbetocin Nasal Spray

PWSA | USA and FPWR will host a combined Community Conversation on Tuesday, November 9th at 8:00 p.m. EST. PWSA | USA CEO Paige Rivard and FPWR Director of Research Programs Theresa Strong will discuss the outcome of the November 4th FDA Advisory Committee Meeting regarding LV-101 carbetocin nasal spray. This will serve as an...

How to Watch the FDA Advisory Committee Meeting

On Thursday, November 4, 2021 from 8:45 a.m. to 3:30 p.m. EST, the U.S. Food and Drug Administration (FDA) will hold an Advisory Committee Meeting to discuss the new drug application (NDA) 214812, for carbetocin nasal spray, submitted by Levo Therapeutics, Inc., for the proposed treatment of hyperphagia, anxiety, and distress behaviors associated with Prader-Willi...

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