Category: Awareness

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...

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...

Celebrate Holidays Safely

by Katherine Crawford, former PWCF Family Support Coordinator; Updated by Lisa Graziano, M.A., PWCF Education and Training Consultant Holidays are a time for gathering, connecting, and celebrating – but are also typically centered on food, which often places enormous stressors on families of a child or adult with PWS. We hope the following tips make your...

Supporting the Community Through Training

Contributed by Kim Tula PWSA | USA supports the PWS community in a multitude of ways. This includes providing training to residential home and school staff. These trainings are an essential component of educating schools, homes, and providers to help our loved ones live safer, healthier lives. Kim Tula is our Alterman Family Support Counselor....

Locking the Fridge, Community Stories text on image of mother and daughter with pws in kitchen

Locking the Fridge, Community Stories

Contributed by Anne Fricke We finally locked the refrigerator! I did not expect my daughter’s reaction. Freya is 12, living with PWS, and while food seeking has not been a big challenge in our lives, it was starting to creep in. For the past few years, we’ve managed by ensuring we put leftovers away shortly after meals....

Map of States the recognize PWS as a Developmental Disability

Joint Legislation Filed to have PWS Recognized as a Developmental Disability in Ohio

PWSA | USA is excited to announce that thanks to the dedication and hard work of our Advocacy Ambassador, Dr. Erin Carter-Cooper, PhD, Ohio Representative Rose Sweeney (D - District 16) and Representative Gayle Mannin (R – District 52) have jointly filed legislation that will make Prader-Willi syndrome a recognized developmental disability in the State of Ohio!...

PWSA | USA Announced as one of Harmony Biosciences 2023 Patients at the Heart Recipients

PWSA | USA Announced as Harmony Biosciences’ 2023 Patients at the Heart Grant Recipient

About Harmony Biosciences Patients at the Heart Grant Via Harmony Biosciences Press Release: Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases, has selected the latest round of nonprofit organizations for its Patients at the Heart and Progress at the Heart...

PWSA USA Advocates to Participate in U.S. Senate Committee Hearing

PWSA | USA Advocates will Participate in Groundbreaking Opportunity for PWS Community!

U.S. Senate Committee Hearing Live Broadcast Link Now Available This Thursday, PWSA | USA advocates will participate in a groundbreaking opportunity for the PWS community! On October 26, 2023, our advocates will be present for a press conference on Capitol Hill, hosted by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Representative Mike Gallagher (R-WI),...

PWSA | USA Volunteer Advocates Jen Garzia and Charles Conway Jr. Share Presentations at Harmony Biosciences Conference

PWSA | USA Volunteer Advocates Jen Garzia and Charles Conway Jr. Share Presentations at Harmony Biosciences Conference

On Monday, October 16 & 17, Harmony Biosciences hosted an annual all-employee meeting in Philadelphia, Pennsylvania. Charles Conway Jr. and Jennifer Garzia, PWS parents to Angelica (3) and Rocco (19), were invited to participate in a panel discussion: Delayed, but not Denied: Perspectives on Caregiving. The title and theme of the talk, Delayed, but not...

Mom and Daughter with PWS climbing mountain

Freya’s Spotlight on Hope: The Climb

Contributed by Anne Fricke, mom to Freya, living with PWS Freya’s 6th grade class started the year studying volcanoes. Part of the learning experience was to travel to Lassen Volcanic National Park for a 5-day camping trip with arduous hikes and days full of activity. To say I had concerns is an understatement, but she...

Boss Building our Social Skills

Joint Announcement: FPWR Partners with PWSA | USA to Provide BOSS Social Skills Groups for Teens and Adults with PWS

PWSA | USA (Prader-Willi Syndrome Association | USA) and FPWR (Foundation for Prader-Willi Research) are thrilled to announce a groundbreaking collaboration to address the social challenges faced by individuals with Prader-Willi syndrome (PWS). FPWR funding has facilitated the development of the Building Our Social Skills (BOSS) curriculum, a highly effective social skills intervention program created...

Soleno Therapeutics Reports Positive Results from DCCR Study C602 for Prader-Willi Syndrome

Soleno Therapeutics, Inc. has revealed positive outcomes from the randomized withdrawal phase of Study C602, an extended treatment study of DCCR (Diazoxide Choline) Extended-Release tablets for Prader-Willi syndrome (PWS). The results, which showed a significant improvement in hyperphagia-related behaviors in the DCCR group compared to the placebo group, support Soleno's plan to submit a New...

Empowering Families Dealing with Prader-Willi Syndrome Through Food Security

Transformative Tales: Empowering Families Dealing with Prader-Willi Syndrome Through Food Security

Contributed by Christopher Rich, Utah PWS Association Living with Prader-Willi Syndrome (PWS) presents unique challenges, particularly in managing food-related behaviors. The experiences of families dealing with PWS takes on an extra layer of complexity, because of the significance of food control and security devices in their lives. In the below excerpts, we dive into those...

How Utah is Enhancing Food Security for Prader-Willi Syndrome Individuals: 2023 PWS National Convention

Contributed by Christopher Rich, Utah PWS Association Among the exhibitors at this year's PWSA | USA National Convention was the Utah PWS Association, which focused on food security and its role in managing PWS symptoms. The exhibition booth showcased practical strategies and innovative solutions to create a controlled environment, emphasizing the importance of food security...

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