"Our hope is that we can be a resource for anyone who has a loved one with PWS, supports a person with PWS, or just wants to know how to better support a person with PWS."

PWS Parents Education Meeting

June 6, 2017

A Special Parents Education Meeting was held June 6, 2017. Be sure to hold the date on your calendar. You won’t want to miss this. We will be presenting several speakers from DBHDD for your benefit. Our key speaker will be Catherine Ivy, Director Community Services, DBHDD. This will be an important opportunity for PWS families to show our numbers and relate our special and unique circumstances to the leaders at the Department of Developmental Disabilities. There will also be a representative from the Department of Community Health (to be determined) for discussion of the complexities of the “HCBS Settings Rule” . This is the rule in our state which provides for “free access to food” complicating the delivery of services to individuals with Prader-Willi Syndrome. THIS IS OUR CHANCE to have the leaders of the state services hear our voice.

Also presented at this meeting, by Evan Farrar, PWSA(USA), were the following topics: SCHOOL ISSUES, PWS RESEARCH UPDATE, CRISIS MANAGEMENT and ADVOCACY ISSUES. These topics affect all of, us on some level, and the information was awesome.