Category: Blog

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...

Mental Health Awareness in Individuals with Prader-Willi Syndrome: Finding and Educating a Mental Health Professional (Part Two in a Series)

Finding a mental health professional who has experience working with individuals with Prader-Willi syndrome can be challenging.  The following are some suggestions to help you with your search: Talk to your primary care provider. She or he might be able to recommend one or more clinicians who are familiar with PWS. Call your state or...

Recognizing Resiliency: PWSA Chapters in Action

While some organizations have scrambled to figure out how to continue their daily operations during the coronavirus pandemic, PWSA Chapters across the country are leading the way with unique virtual event experiences. Here are some original ideas that PWSA Chapters have been doing to keep the PWS community connected virtually:   The Prader-Willi Syndrome Association...

National School Backpack Awareness Day

Backpacks have become as fundamental to the school experience as No. 2 pencils and an apple for the teacher. And when used properly, they are extremely useful, reducing neck, shoulder and back strain by distributing weight evenly. Unfortunately, muscle strain can happen if the backpack is too heavy or carried by a single shoulder strap,...

September Is Newborn Screening Awareness Month

What is newborn screening? Newborn screening is one of the most successful public health programs ever enacted, saving thousands of lives over the past 50 years. Newborn screening allows physicians to catch rare genetic conditions at birth and start treatment almost immediately following birth; it enables efficient diagnosis and access to treatments that can save...

National Childhood Obesity Week

With childhood obesity presenting a significant threat to child health, the American Academy of Pediatrics (AAP) is recognizing National Childhood Obesity Awareness Month during the month of September. Early recognition and treatment of obesity has advantages. As we know in the PWS community, it is a daily struggle for most of our families. The AAP...

Siblings and Communication

Communication is key in any family and is especially important in a family impacted by Prader-Willi syndrome (PWS). Experts believe that open, clear, and frequent communication is necessary for healthy family functioning (Green & Peterson, 2019). Research shows that most parents have sparse conversations with their children about what it is like to grow up...

Managing Gastroparesis Related Stress

It is common to feel sad or discouraged when you are trying to manage a chronic condition like gastroparesis. Like Prader-Willi syndrome, gastroparesis is a multi-faceted condition and must be approached from a variety of angles. A combination of medical treatments, complementary therapies, adequate nutrition, proper dietary modifications, a positive attitude, and supportive lifestyle practices...

Siblings and Food

Food restrictions in the home, although necessary for the safety and health of the family member with Prader-Willi Syndrome (PWS), can negatively impact siblings. The constant need to lock food adds intense stress and worry to siblings on several levels. For example, if the sibling forgets to lock access to food, this could result in...

Lifestyle Practices to Manage Gastroparesis

  The lifestyle aspect of managing gastroparesis is often overlooked or underestimated. Some people think it is too simple a response for such a complicated problem. In reality, the choices that you make in your child’s daily life matters a lot in managing their gastroparesis related symptoms. Lifestyle practices can have a significant impact on...

Give Them Your Time: Spend Time with Siblings to Improve Their Well-Being

Many siblings of individuals with Prader-Willi Syndrome (PWS) have weakened resilience which negatively impacts their psychosocial well-being. The daily turmoil and trauma of living with a family member with PWS depletes sibling internal resources. These siblings then face their own challenges with weakened resilience and strength. You as parents and the professionals in the siblings’...

Prader-Willi Syndrome Association | USA and the Foundation for Prader-Willi Research Partner for Telehealth Needs Assessment

Prader-Willi Syndrome Association | USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to better understand the demographic makeup of the Prader-Willi syndrome (PWS) parent...

Prader-Willi Syndrome and Gastroparesis

There is little evidence in the literature regarding the incidence of gastroparesis in PWS and how it affects families in the PWS community. Within the Global PWS Registry, 13% of participants have been diagnosed with gastroparesis (N=739). Of those with gastroparesis, more than half were diagnosed under age 10. The severity of gastroparesis reported ranges...

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