Category: Awareness

Holidays and Siblings

The holidays, usually filled with excitement and family connection, often mean something completely different for families with a member with Prader-Willi Syndrome (PWS). Exorbitant amounts of food, continual interruptions to the normal schedule, and extended social interactions add stress for the individual with PWS and the entire family. Siblings of individuals with PWS are already...

Holidays and PWS Food Security

Food Security: Planning for the Holidays, Family Gatherings and Parties Holidays, family gatherings, parties and FOOD go hand in hand. With thoughtful planning and proactive preparation, these events can be successful, healthy experiences for everyone. It’s important that everyone is prepared and knows the game plan. Without a plan, the person with PWS may experience...

PWSA | USA Introduces Twenty-Four Hour Family Support

For Immediate Release PWSA | USA Introduces Twenty-Four Hour Family Support [Sarasota, Florida, October 30, 2020] Prader-Willi Syndrome Association | USA (PWSA | USA) announced today it will begin providing 24-hour Family Support services to individuals and families in the Prader-Willi syndrome (PWS) community. “The past year has been challenging for everyone, and this is...

Halloween Fun for Everyone!

Children, and many adults, look forward to Halloween with great anticipation…Bags full of sugary treats, scary decorations, and the thrill of trick or treating with friends and family…What could be more fun? But, what do you do for Halloween when your loved one has Prader-Willi syndrome? Can they safely participate in the festivities? The answer...

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...

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...

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...

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’...

Home Schooling: How to Pick Curriculum: What to Use, Where to Get, How to Implement (Part 4 in a Series)

There are hundreds of different options when it comes to picking curriculum which can make it both exciting and overwhelming.  Hopefully by the time you’re done reading this you’ll feel at least a little more prepared.  As with all the articles in this series, we’ll discuss both distance learning through your school and traditional homeschooling....

Sibling Caregivers

Siblings often make excellent caregivers for their sibling with Prader-Willi syndrome (PWS) because they grow up around PWS, understand the realities of the syndrome, and are trained throughout their lives to take care of their sibling. Therefore, siblings seem to be a parent’s perfect choice to tend their family member with PWS and often become...

Surviving Teletherapy

If you have a loved one who has Prader-Willi syndrome (PWS), you have no doubt tried some sort of teletherapy due to the Coronavirus pandemic. While some individuals have taken easily to this new way of interacting, many are finding it difficult. If your loved one falls in the latter category, a few suggestions are...

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