Category: Awareness

One Voice, One Message, One Goal

If you are interested in spreading awareness of PWS, engaging elected officials, and traveling with fellow PWSA | USA supporters, YOUR time has come! PWSA | USA is looking for volunteers from each state to participate in launching a special project to promote PWS awareness throughout the United States. For more information, please contact Dorothea...

Brooklyn’s Story

As told by her mom Lauren When we found out Brooklyn had Prader-Willi Syndrome, we felt lost, overwhelmed, alone and devastated. Our geneticist told us to reach out to PWSA | USA. Right away, they gave us hope in what we thought was a hopeless situation. PWSA | USA sent us a packet of information...

Josephine’s Story

As told by her mom, Jennifer The birth of our first child, Josephine and the weeks that followed in the NICU often brought to mind the term “brutiful.” We were so immediately deeply in love with Josephine and quickly so scared as well. Those days were so hard, but also full of beauty when we...

Make Your Voice Heard During Rare Disease Week

Rare Disease Week will take place July 14, 2021 – July 22, 2021 and it’s a chance to make your voice heard! EveryLife Foundation will be leading Rare Disease Week, which educates those of the rare disease community on federal legislative issues, meet other advocates, and share their unique stories with legislators. If you are...

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?  I know I would not be.  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...

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.   It is important for this individual to be passionate, knowledgeable and organized.  They must be a team builder as well as build and maintain alliances.  They must be vigilant in making sure there are the proper resources to maintain...

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