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Letter to our families:

Risk of Stomach Necrosis and Rupture

As PWSA’s new Executive Director, I’ve been given a unique opportunity to learn how much hard work goes into creating and updating the many support services we provide to people and families living with PWS.  Recently, Janalee Heinemann our Director of Research and Medical Affairs, along with several key physician volunteers moved quickly to create and disseminate a new critical alert about an important medical issue facing some people with PWS titled, “Risk of Stomach Necrosis and Rupture.”  Janalee explains: 

“We are putting this alert on the web site and distributing it to all of the agency providers in our database.  We thank Drs. Susanne Cassidy, Ann Scheimann, Dan Driscoll, Merlin Butler, and David Stevenson for their input.  Although this GI crisis needs a strong warning, and we will certainly use it when communicating with emergency medical personnel and in other crisis situations, it is important to remember that by far, most children and adults with PWS who die, do so due to obesity related causes.”   

This is what support for people with PWS looks like: providing timely information and services to make an immediate and important positive difference in lives.  To view a copy of the new alert, go to: and it is under both the “Medical” tab and in the “Medical Alert” section.  

I hope, as you read this alert and share it with others, you will also consider helping us to continue to have the financial resources to maintain and improve our support services now and in the future. You can do so by generously supporting the PWSA (USA) 2010 Angel Fund Drive, which is going on right now and directly contributes to the creation of this type of important medical alert.  To learn more and donate, please visit: 

Thank you for your support!   

Evan Farrar

Executive Director





Last updated: 02/09/2012

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