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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...

Family of 4 dressed in red and white stripes lays looking at a fireplace with the title Managing Holiday Expectations and logo for Prader-Willi Syndrome Association

Managing Holiday Expectations

We are in the chaotic midst of the holiday season. Traditions, gatherings, travel, food, gifts, more food, and expectations of how it’s all supposed to look permeate this time of year. These expectations and traditions can be very challenging for families in general, but especially families of loved ones with PWS. Expectations may be high,...

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!...

Acadia and Compass PWS Trial Logo

Acadia Pharmaceuticals has Announced the Initiation of its Phase 3 Study for Nasal Carbetocin to Treat Hyperphagia

This week, Acadia Pharmaceuticals announced the initiation of its Phase 3 COMPASS PWS study! This study focuses on evaluating the efficacy and safety of carbetocin nasal spray (ACP-101) for treating hyperphagia in Prader-Willi syndrome. The COMPASS PWS trial is a 12-week, double-blind, randomized, placebo-controlled global Phase 3 trial, with approximately 170 participants aged five to...

Holiday Gift Guide, Sensory Edition by Prader-Willi Syndrome Association

Holiday Gift Ideas: Sensory Edition

Prader-Willi syndrome is a spectrum disorder, and the spectrum is broad. Developmental milestones don’t always apply to our loved ones with PWS, not in the typical ways. That certainly does not mean they aren’t developing and learning new skills. It simply means that sometimes, especially for our emotional well-being, we need to toss those “age-appropriate”...

Simple Self-Care by Prader-Willi Syndrome Association

Simple Self-Care

Contributed by Anne Fricke, mom to Freya (living with PWS) What Does Self-Care Look Like for You? For some, self-care is regular massage appointments and weekend getaways. Others sign up for dance classes, spend hours on a golf course, or go out for fancy dinners and nights on the town. These are all great ways...

Food Security on a Budget

Food Security on a Budget

Whether we are prepared or not, PWS eventually demands that we secure the food in our homes. When we implement food security, we help keep our loved one safe. Though food security will ultimately help create relative safety and peace in our lives, planning for it may be a daunting and overwhelming task. But it...

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),...

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