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.
- Many individuals with PWS have temperature dysregulation so they might not elevate a fever when they have an illness.
- Underlying respiratory conditions are also a problem in many with PWS. Breathing difficulties warrant urgent medical attention.
- Keep in mind that many with PWS have a high pain threshold when evaluating their health status.
- 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.
- 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:
- COVID-19 Statement from PWSA (USA): English and Spanish
- Resources to help you explain the virus to your loved one with PWS in English, Spanish, and Chinese
- Department of Developmental Services Updates: Directives to regional centers, providers, and individuals with developmental disabilities
- Top Questions State Council on Developmental Disabilities Received from Self-Advocates: English and Spanish
- Rare Caregiver Respite Program – Parents and care providers may be eiligible for up to $500 in respite care from the National Organization for Rare Diseases (NORD).
- NORD Financial Assistance Program – NORD will provide up to $1,000 financial assistance to eligible patients. It provides funds for essential expenses including, but not limited to unexpected utility expenses; cellular or internet service; emergency repairs to car, home or major appliances; and rent or mortgage payment assistance.
- Daily COVID-19 updates from the CA Department of Public Health
- Scam and Fraud Alert: CA State Council on Developmental Disabilities
- Regional Center COVID-19 Resources Frequently updated resource list from ARCA.
General Resources for Explaining the Coronavirus:
- PWSA (USA) Video: Talking to Your Children About COVID-19
- PWSA (USA): Managing Pandemic Anxiety and Stress
- PBS: How to Talk to Your Kids About Coronavirus
- Free Children’s Book Download to explain COVID-19
Self-Care and Mental Health Resources:
- PWSA (USA): Self-Care for Caregivers
- Harvard Health Publishing: Coping with Coronavirus Anxiety
- CDC: Managing Anxiety & Stress
- The Guardian: The family lock-down guide: how to emotionally prepare for coronavirus quarantine
IEP’s and at Home Education:
- Question and Answers from Wrightslaw.com on IEP’s and public education during school closures
- At home resources from PWSA (USA)
- KQED Learn at Home resources
- Live Cams of animals for observation, learning & fun
- 20 Virtual Field Trips to Take With Your Kids
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 firstname.lastname@example.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.
Emily Dame, M.Ed. Diane Kavrell
Executive Director President