PWSA Blog

Blue backgound with Harmony Bioscienes label for pitolisant as treatment for Prader-Willi Syndrome

Pitolisant Receives Orphan Drug Designation

Pitolisant from Harmony Biosciences Receives Orphan Drug Status from FDA for Treatment of PWS The FDA has granted Orphan Drug status to pitolisant, the trial drug from Harmony Biosciences to treat excessive daytime sleepiness (EDA) and behavioral disturbances. The designation shows that the FDA considers pitolisant to be a promising treatment for people with PWS. ...

Neuren Pharmaceuticals PWS Study

Neuren Pharmaceuticals Opens Third Trial Site for Phase II PWS Study

Neuren Pharmaceuticals is pleased to announce their third site participating in their Phase II, Open Label, PWS Study (Neu-2591-PWS-001) is now open for screening! Important information regarding this exciting milestone: Three sites are now open to enrollment! Rare Disease Research (RDR), located in Atlanta, GA, and Uncommon Cures, located in Chevy Chase, MD (8 miles outside of Washington, D.C.) and...

Maintaining Goal Weight

Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the...

A young woman with Prader-Willi Syndrome holds an award for being a Young Rare Leader in Advocacy

Awarding Advocacy

PWSA | USA Spotlight on Hope contributed by Kristi Rickenbach, Mom to Justice Justice, 20 living with PWS, has been a member of the Young Adult Rare Representative (YARR) since January 2023 and recently had the opportunity to learn more about one of the things she is passionate about, Advocacy.The EveryLife Foundation offers a YARR...

Gray tennis shoes and pink laces of someone with Prader-Willi syndrome walking on a forest trail

Movement and Motivation

We know the importance of exercise for our loved ones with PWS (as well as caregivers if you read last month’s blog on Exercise, Movement, and Mental Health). There are many ways people with PWS can move their bodies to experience the benefits of exercise. Still, sometimes, we have to get creative to get our...

Ask Nurse Lynn: Cataplexy

Question: My daughter is 12 (deletion). She was never officially diagnosed with cataplexy, but when she was younger there were obvious moments of cataplexy like behavior (usually if she was tired and laughing.) Is it necessary to get an official diagnosis of cataplexy, if so, how is that done, and is it something that people...

PWSA USA Development Specialist Position

PWSA | USA Now Hiring for Director of Accounting, Development Specialist Positions

Position: Full Time Development SpecialistLocation: Remote Do you have a passion for cultivating relationships and supporting those affected by PWS? Here is your opportunity! PWSA | USA is on the lookout for a dynamic individual to join our growing development team! As the Development Specialist, you’ll play a crucial role in special projects, grassroots support,...

PWS Parenting Hacks, a father carries his daughter with Prader-Willi Syndrome on his shoulders through a forest

PWS Parenting Hacks

We reached out to our PWS community of parents and caregivers to ask, “What is your PWS Parenting Hack?” Our goal was to gather tips and tools that help parents and caregivers navigate the challenges of PWS. What may seem like a simple tip from one parent could be life changing for another. So, please...

PWS Advocacy

PWS Mom Advocates for Wisconsin Legislation to Lower Treatment, Therapy Costs for Individuals Living with Rare Diseases

Contributed by Katie Moureau On Wednesday, January 10, 2024, Katie Moureau, mom to a 9-year-old boy with PWS was able advocate in support of Assembly Bill 687 – Authorization of Value-Based Arrangements for Medicaid Programs for all rare diseases. She was one of 2 advocates testify. As we know there are NO FDA approved treatments...

Stacked rock tower against a backdrop of pebbles and water with Prader-Willi Syndrome Assocation logo

Meditation, Mindfulness, and Self-Care

Contributed by Emily Felt Hi PWSA Community! Every month, I collaborate with the PWSA communications team to contribute ideas that enhance the remarkable ways PWSA educates and supports our community. Like many volunteers, I am also a mother to an adorable 11-year-old girl named Olivia, who is living with PWS. In addition to my volunteer...

Photo collage of multiple children with Prader-Willi Syndrome

When Friends Turn Into Family

Contributed by Jennifer Lloyd When it comes to finding people who understand PWS, it can feel isolating – especially after a new diagnosis. Silas and Nora met at Physical Therapy at a few months old. I remember his PT telling me there was a little girl with PWS that was going there and I knew...

PWS family does squats in their living room with the title Exercise, Movement, and Mental Health and Prader-Willi Syndrome Association logo

Exercise, Movement, and Mental Health

In the PWS community, we emphasize the importance of exercise and movement as management strategies and life-saving habits for people living with PWS. With the complications of hyperphagia and a slower metabolism, exercise is critical for care. But our loved ones are not alone in this. Physical fitness is incredibly valuable and needed for parents...

PWSA Rare Aware Art Share

Introducing the Rare Aware Art Share

We are excited to announce the launch of PWSA | USA’s brand new initiative – The Rare Aware Art Share! This virtual art show aims to spotlight the voices of individuals with Prader-Willi syndrome. We hope to learn more about each individual, their lives, and their experiences as someone with PWS. Our hope is that...

The mother of an individual with Prader-Willi Syndrome writes into a journal with the text Journaling as Therapy

Journaling as Therapy

Receiving a diagnosis of Prader-Willi syndrome can feel isolating and overwhelming. Many of us are thrust into a world we never knew existed. From the start, we are met with statistics and information about genetics, therapies, medications, specialists, nutrition, and futures that seem unfathomable. The tumultuous emotions that accompany this time will likely get shoved...

PWSA Spotlight on Hope

Hope in the Journey

PWSA | USA Spotlight on Hope, Contributed by Michele Hampton, Mom to Jayda (living with PWS) Jayda was born right on time weighing in at 5lbs 12oz. We were initially told she was “slow to start” and just may take some time to adjust. But, as I am sure all of us understand, she was...

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