Update on PWS & COVID-19

Updated May 1, 2020

PWCF is here to support you and your family’s heath and wellbeing during this challenging time. Because of the unique medical needs of persons with Prader-Willi Syndrome, we understand you may have specific questions about how to keep your loved ones and families safe, and we are here to support you every step of the way.

Our office will remain open and in the event of a medical crisis, please remember our medical crisis line may be utilized for emergencies. After you have called 911 call 310-764-8083 and leave a message, someone will return your call promptly.

We know there is a lot of information regarding COVID-19 circulating right now, so PWCF has collected some links below that we believe are appropriate for persons with PWS and their families. As you review this information, it is very important to remember that persons with PWS do not always present with typical symptoms when sick, and they may be at risk for a delay in identification of illness because of this.

  1. Many individuals with PWS have temperature dysregulation so they might not elevate a fever when they have an illness.
  2. Underlying respiratory conditions are also a problem in many with PWS. Breathing difficulties warrant urgent medical attention.
  3. Keep in mind that many with PWS have a high pain threshold when evaluating their health status.
  4. To know if the person with PWS is sick, look for arbitrary things such as subtle changes in behavior, sleeping patterns, or increase in anxiety.
  5. Always take your medical alert booklet with you to the hospital.

We have sourced the following links from several different disability organizations. Please know we offer these as resources only.

Algunos de estos recursos están disponibles en Español.

Disability Specific COVID-19 Updates:

General Resources for Explaining the Coronavirus:

Self-Care and Mental Health Resources:

IEP’s and at Home Education:

At Home Activities and Exercise Resources:

  • Fundoroo: A play-based physical activity curriculum with directions, videos, daily plans available as a book (Kindle version and Spanish version) through Amazon as well as an app available on the Apple App Store and Google Play. FunDoRoo was developed from a research study conducted with families with children with PWS called the Active Play at Home Intervention
  • SONC Health and Fitness at Home –  Healthy Athletes® interactive online program designed to help Special Olympics athletes and supporters to stay healthy, motivated, engaged, and connected — while at home!
  • Go Noodle – dances, movement, games and mindfulness activity videos
  • Cosmic Kids Yoga – YouTube channel with fun mindfulness and yoga activities
  • Free Drawing Classes from Famous Artists
  • Wash Your Lyrics: Generate hand washing info-graphics based on your favorite song lyrics

Please call us and tell us how you’re doing! 800-400-9994, or send us a quick update to info@pwcf.org. On behalf of our board of directors and staff, it is our honor and privilege to serve you, particularly during challenging times, and we thank you for being a part of Prader-Willi California Foundation.

Sincerely,

Emily Dame, M.Ed.                          Diane Kavrell

Executive Director                           President