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...
Category: Awareness
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...
PWSA | USA Voices Support for Ally’s Act
Ally Tumblin, a fourth grader in Colorado, was born without a right ear and ear canal, a condition known as Microtia Atresia. The only way she can hear is a with a specialized bone-anchored hearing device that costs between $5,000-30,000… and none of it is covered by insurance. Ally, motivated to change the law and...
Smart Pens: A Game Change for Students with PWS
In the earlier years of my educational journey, I struggled in school. I was falling behind in my classes, asked a lot of questions, missed taking all of my notes down, always needing one on one assistance, and was slowing down the class due to the teacher having to repeat what he had said so...
Home Schooling: But What About Socialization? (Part 7 of a Series)
Ask any homeschooling family and they will tell you that the number one question when someone finds out they home school is “but what about socialization?” I often tell people that if we took advantage of all the opportunities to socialize, we would never get any lessons done. Right now, with everyone across the country...
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...
A Young Man’s Perspective on Prader-Willi Syndrome: Securing Food
A big help for me is having the refrigerator and pantry locked twenty-four hours a day, seven days a week. Having the pantry and refrigerator locked reduces my anxiety in or around those areas of the house. By implementing the lock-up tip, you will help keep your child healthy and minimize health issues. My own...
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...
How Can I Work and Manage My Child’s Education? (Part 6 in a Series)
Working parents face more challenges when educating their children at home. Juggling the demands of your job with the needs of your child can be tricky, but not impossible. Using some of the tips in this article and some advanced planning, you can successfully manage both responsibilities. Flexibility has been mentioned in previous articles both...
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’...
What Does a Typical Home School Day Look Like? (Part 5 in a Series)
“Typical home school” is somewhat of an oxymoron because each family’s day can look entirely different; even an individual family’s schedule may look different from day to day. Most of us are used to thinking that school has to look the way it does in traditional brick and mortar schools with kids sitting at a...
Socializing for Adults with PWS During the Pandemic
One of the many areas impacted by COVID-19 virus has been the ability of adults with Prader-Willi syndrome (PWS) to socialize. As there are many studies that outline the emotional challenges and decline that social distancing is causing, it is important to explore and discuss opportunities for adults with PWS to create new social experiences...