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...
For Immediate Release PWSA | USA Introduces Twenty-Four Hour Family Support 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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.