Category: Education

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....

Better Speech and Hearing Month

The month of May is recognized as Better Speech and Hearing Month to bring awareness to the many speech, language, swallowing and hearing disorders among children and adults. Individuals with PWS often present with a variety of clinical features that may impact their speech and language development (Lewis, 2023) including reduced articulation, hypernasality or hypo...

How to Develop Positive Relationships with Your School District

Navigating the special education process world can be intimidating, overwhelming, and sometimes downright scary for parents. Building a positive and collaborative relationship with the school district will benefit your student, you, and district officials. It's important to remember that there will be differences of opinions, mistakes, and difficult conversations throughout the school years. When you...

We Are Brave Together

Founded in 2017 by Jessica Patay, ​mother to a 18-year-old son with Prader-Willi syndrome, We Are Brave Together (WABT) is a nonprofit organization whose mission is to support caregiving mothers to children, any age, with any diagnosis, disability, or challenge, including learning differences, ADHD, and mental health issues. This international community includes over 1350 moms...

Webinar Opportunity | Homeschool: What You Should Know

We are excited to offer a special webinar Monday, August 9, 2021 at 7:30 p.m. EST on homeschooling and PWS. The COVID-19 pandemic forced parents to make difficult decisions regarding their children’s education.  Join Julie Casey and Danielle Warmuth to learn from veteran homeschoolers about curriculums, services, and socialization. REGISTER IN ADVANCE HERE __________________________________________________________________________________________________________________  ...

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...

Virtual Learning Tips for Parents

Students have been participating in virtual learning for months now, and families and educators are themselves learning what works and what does not. Parents, especially parents of students receiving special education supports, are taking on more responsibility for their child’s learning than ever before.  However, the (public) school district is still responsible to provide a...

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