Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Care Providers and Supportive Living 

This page is designed to enhance and support the work of residential care and other providers for people with PWS.  If you are a residential care provider, please Click Here to submit your provider information so your services can be included in our Provider Database which is utilized by families living with PWS around the country. This is a great way to let people know what you do. If you are already in the database, please check to see if the information is up-to-date.

PWSA(USA) will host its annual Providers Conference concurrent with the Hyperphagia Conference. Beginning with an all-day session on Thursday, and continuing through the morning session on Friday, this conference addresses the many unique support issues related to Prader-Will syndrome. There will be informative and interesting presentations on medication management, sensory integration, and optimal training curricula for caregivers supporting those with PWS. Providers will have plenty of opportunities to engage each other and contribute to group problem solving of issues facing each of us. This conference is a “must attend” for residential providers, day program and supported employment staff and others who provide services to people with PWS. Please watch this website, the website of PWSA(USA), and The Gathered View for a schedule of speakers and other exciting activities of the conference! Registration is open, so don’t delay in holding your spot! Click here

Training and Continuing Education Opportunities

PWSA (USA) has available many resources to assist providers.  Several are posted in our “Links and Resources” section for you to view and download.   

Links and Resources [click here]

GI HOLIDAY DEATHS ARE A RISK  

An example is a  28 yr old young woman who died suddenly three days after Thanksgiving.    She was at a good weight, and had been in placement for several years.  She was home for Thanksgiving and "ate a lot" according to mom.  Friday she was vomiting profusely.  On Saturday, she had diarrhea, but said she was hungry.  She passed out, and mom called an ambulance.  They were unable to revive her.  No autopsy.  They said they found fluid in her lungs, so put her death as asphyxiation.  Our physicians believe the primary cause of death was related to the GI necrosis and/or perforation deaths we have been seeing particularly over the holidays.  We also had two more confirmed GI necrosis deaths this year – one during an admission in a psychiatric unit where she was overfed. 

We are taking several actions to further alert parents and providers – AND NEED YOUR HELP, YOU CAN SAVE A LIFE!  We need to get a warning to all providers and see that they get a very clear warning to all parents who have adult children in placement.  With the help of Dr. Barb Whitman, we have put together a sample letter that providers can use when they send a person with PWS for a home visit.   Also, in both the Medical Alert section of our web site and the general medical section, we have placed an alert titled, Risk of Stomach Necrosis and Rupture.

The classic situation is that the person with PWS is slim due to being in a controlled environment, but when he/she goes home for a home visit (especially the holidays) everyone gets lax thinking a few pounds won’t kill them.  Well, a few pounds might not kill them, but an overeating binge might!  Help us spread the word.

Click here for sample letter

Support:

 



GoodSearch cause banner

For more details click here.

Combined Federal Campaign #10088