Category: Health & Wellness

Nutrition in the PWS Family

Michael Tan, MS, RD, LDN, is a Dietitian who works with Dr. Jennifer Miller at the University of Florida Health. He spoke at PWSA | USA’s United in Hope Convention in June of 2023 and sees a large number of families in the PWS community. I reached out to Michael with some general questions about...

Gray tennis shoes and pink laces of someone with Prader-Willi syndrome walking on a forest trail

Movement and Motivation

We know the importance of exercise for our loved ones with PWS (as well as caregivers if you read last month’s blog on Exercise, Movement, and Mental Health). There are many ways people with PWS can move their bodies to experience the benefits of exercise. Still, sometimes, we have to get creative to get our...

Ask Nurse Lynn: Cataplexy

Question: My daughter is 12 (deletion). She was never officially diagnosed with cataplexy, but when she was younger there were obvious moments of cataplexy like behavior (usually if she was tired and laughing.) Is it necessary to get an official diagnosis of cataplexy, if so, how is that done, and is it something that people...

Stacked rock tower against a backdrop of pebbles and water with Prader-Willi Syndrome Assocation logo

Meditation, Mindfulness, and Self-Care

Contributed by Emily Felt Hi PWSA Community! Every month, I collaborate with the PWSA communications team to contribute ideas that enhance the remarkable ways PWSA educates and supports our community. Like many volunteers, I am also a mother to an adorable 11-year-old girl named Olivia, who is living with PWS. In addition to my volunteer...

PWS family does squats in their living room with the title Exercise, Movement, and Mental Health and Prader-Willi Syndrome Association logo

Exercise, Movement, and Mental Health

In the PWS community, we emphasize the importance of exercise and movement as management strategies and life-saving habits for people living with PWS. With the complications of hyperphagia and a slower metabolism, exercise is critical for care. But our loved ones are not alone in this. Physical fitness is incredibly valuable and needed for parents...

Two hands cup the sunlight on the horizon over an ocean with the text "Looking Ahead' in relation to the work of PWSA for the Prader-Willi Syndrome community

Looking Ahead

For those living in the Northern Hemisphere, this is the darkest time of the year. Perhaps this fact is the underlying inspiration for winter festivities, the need to create light where it has receded temporarily beyond the horizon. The days are short, the nights are long, and yet we push ourselves to gather and plan...

Simple Self-Care by Prader-Willi Syndrome Association

Simple Self-Care

Contributed by Anne Fricke, mom to Freya (living with PWS) What Does Self-Care Look Like for You? For some, self-care is regular massage appointments and weekend getaways. Others sign up for dance classes, spend hours on a golf course, or go out for fancy dinners and nights on the town. These are all great ways...

PWSA | USA, Let’s Go Fitness Team Up to Provide Free Exercise Opportunity for PWS Individuals

December 22, 2021 -- With a new year, comes new and exciting opportunities! PWSA | USA has partnered with Let’s Go Fitness, an online fitness community that celebrates diverse abilities, to provide free virtual exercise classes for individuals living with Prader-Willi syndrome. On January 7, 2022, an application will be available for those interested in...

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