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 […]
On September 8, 2018, PWSA (USA) help a parent mentor workshop at the Monroe Carrell, Jr. Children’s Hospital at Vanderbilt University in Nashville, Tennessee. PWSA (USA) Parent Mentor Director, Diane Seeley, created the innovative workshop to educate parent mentors about a variety of topics, including current trends in dietary management, advantages and safety of various […]
By: Cindy Szapacs, M.Ed. BCBA Before getting into the nuts and bolts of this article, I would like to introduce myself and explain why I am writing this series of articles. I am a mother of two boys, one of whom has Prader-Willi Syndrome. I also am a Board Certified Behavior Analyst. I currently work […]
by Abigail Ogilbee Have you ever worn a great pair of sunglasses in the summer? The lake isn’t as blinding when the sun hits the waves, the trees are a little greener, and the world is a little more crisp. Take them off and the sun burns your eyes making you squint with pain. Elsa […]
Kate Beaver, MSW, CSW-Family Support Counselor Because her daughter has Prader-Willi syndrome, Kate had first-hand knowledge of the challenges families encounter with the syndrome and had valuable personal experience in how to access services and support for her family prior to joining the PWSA (USA) staff. As a Crisis Intervention and Family Support Counselor, Kate’s […]
One of the most difficult challenges parents face is managing their child’s behavior. Whether it occurs at home, at school, or in a residential care setting, problematic behavior is one of the most frequent reasons parents and providers call PWSA (USA) for help. The first step to effectively manage behavior is to identify the problematic […]
Helping Your Grandchildren “Experience” Philanthropy How often do you hear that today’s generation of children are self-absorbed or one of entitlement? That’s a pretty harsh statement to make, and one that I don’t entirely agree with. I think kids today don’t just want things – they want experiences too! Children see the needs of the […]
The recent webinar: How Patients Can Partner to Speed Treatments for PWS, co-presented by FPWR and PWSA-USA, is now available. This webinar provides important information about PWS clinical trials including: what to expect when participating in a clinical trial, what questions you should ask, and how to get the information you need to decide if […]