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PWSA | USA Expands Capacity to Serve With Transition of the Prader-Willi Care Coordination Program from The Childrenโ€™s Institute of Pittsburgh

FOR IMMEDIATE RELEASE Contact: Paige Rivard, CEO Prader-Willi Syndrome Association USA (PWSA | USA) privard@pwsausa.org / 941-487-6724 ย  Prader-Willi Syndrome Association | USA Expands Capacity to Serve With Transition of the Prader-Willi Care Coordination Program from The Childrenโ€™s Institute of Pittsburgh (May 19, 2021- Sarasota, FL) PWSA | USA, a national nonprofit organization with a...

#HopeIsHere – Ethan and Mason

Thinking back to NICU, and being told “I don’t know what’s wrong with your baby. But something is, and it’s pretty serious.” I never ever thought we’d get to the point where we could could just live our lives casually. Casually cuddling on the couch. Casually packing up and heading out for a walk. Casually...

#HopeIsHere – Conner

As I was growing up, my family moved to Switzerland.ย  At the time, we were not aware that I had Prader-Willi Syndrome.ย  As a child, I did very well in school.ย  I attended an international school in Switzerland, it was difficult adjusting to a new school, especially in a foreign country.ย  I moved to Switzerland...

#HopeIsHere

Hi, my name is Aran (pronounced Aaron), and I am part of the Prader-Willi Syndrome family. I was diagnosed at three weeks old. I was fortunate that my state has a fantastic Early Intervention program, and I was able to start physical and occupational therapy within the fourth week. That work was tough, but it...

Pioneers in PWS – The Delegates to IPWSO

This article began as an acknowledgement of the nearly 30 years of PWSA | USA elected delegates to IPWSO, the International Prader-Willi Syndrome Organisation, but rapidly became much more than that.ย  PWSA | USA was actually instrumental in the founding and development of IPWSO.ย  The mission and vision of IPWSO is similar to that of...

Teacher Appreciation Week

Teacher Appreciation Week Would you be where you are today, without the teachers in your life who encouraged, inspired and believed in you?ย  I know I would not be.ย  I considered being a teacher – who does not love the idea of getting out of work by three every day and having summers off? What...

Pioneers Who Cared for Persons with PWS in Medical and/or Psychiatric Crisis

Despite our growing understanding and knowledge of the management of Prader-Willi syndrome (PWS), there are still persons with PWS who experience life-threatening complications due to obesity; and others who require inpatient treatment for severe, challenging behaviors.ย  There are a handful of professionals who became experts in caring for these individuals at a time when they...

Pioneers Devoted to Educating and Supporting Residential Care and Education Professionals

Providing residential care services to children and adults with Prader-Willi syndrome (PWS) is often very different and challenging for human service professionals.ย  Some of the supports that are often successful for persons with PWS go against what many professionals have learned in school about providing services for the developmentally disabled.ย  Limiting access to food and...

Pioneers in PWS – The Parent Mentoring Program

โ€œYour child has Prader-Willi syndrome.โ€ย  Everyone remembers where you were when you first heard those words.ย  What does that mean?ย  What do we do now?ย  What will life be like for my child? ย In todayโ€™s world, you Google the term and likely see Prader-Willi Syndrome Association appear in response.ย  When you complete the new diagnosis...

Sleep Disturbances in Prader-Willi Syndrome

Sleep health is essential for everyone; it is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep disturbances can occur from many...

Leading PWSA | USA; Our Executive Directors

The leadership in an organization is one of the most important elements to achieving long-lasting success.ย ย  It is important for this individual to be passionate, knowledgeable and organized.ย  They must be a team builder as well as build and maintain alliances.ย  They must be vigilant in making sure there are the proper resources to maintain...

Prader-Willi Syndrome Association Announces First Virtual Convention

FOR IMMEDIATE RELEASE: January 14, 2021 Sarasota, Florida:ย Prader-Willi Syndrome Association | USA (PWSA | USA) is pleased to announce its upcoming 36thย National Convention is moving to an all-new virtual format. Due to the ongoing health concerns brought forth by the COVID-19 pandemic, the organization will provide members of the Prader-Willi syndrome community with a variety...

Our First Pioneers to Identify Prader-Labhart-Willi Syndrome: Dr.โ€™s Zellweger, Prader, Willi and Labhart; Part 2 in a Series

Dr. Hans Zellweger was a tall, adventuresome doctor from a patrician family in Chur, the oldest town in Switzerland.ย  After seeing the devastating effects of polio after World War I, his life goal was to understand neuromuscular disorders in children.ย  After training across Europe, and working with Dr. Albett Schweitzer in Africa, he became chief...

Living and Thriving with PWS (Part 3)

Living and Thriving with PWS – Love, Faith, and Future Grace By Derek Montecalvo   One day, at the residential home in Barnstable where I was living, there was a commotion outside as staff and residents transitioned a new resident into his room. A beautiful young woman happened upon my doorstep during this transition. The...

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