18 and up eSupport Group Introduction

This PWS E-Mail Support/Information Program is sponsored by Prader-Willi Syndrome Association (USA) to provide information and support to parents of children who have Prader-Willi Syndrome (PWS), as well as care providers, extended family members, and professionals. Participants in this eSupport Group provide support to each other, share information and parenting strategies, and discuss issues related to age of their child, the Teen years. The program provides the opportunity to connect people who wish to share their experience or expertise handling the unique day-to day issues and feelings that so many parents and family members may face who have children with PWS. No one need feel alone.

Subscribers on the this eSupport Group list should be parents, extended family members, and/or caregivers of children with PWS aged 18 years and older. Additionally, some helping professionals may join the list in order to better understand the experience of families, to learn more about PWS, and to offer helpful comments and understanding from their perspective.

Due to the nature of Prader-Willi syndrome, symptoms tend to change over the course of the individual’s lifetime, therefore PWSA’s eSupport Groups have been organized according to children’s ages: Birth to 5 Years; 6-12 Years; Teen Years; 18 and up. There is also a Sibling eSupport Group.  Support and input on this eSupport Group is welcome from care providers and parents of children of all ages, with age- or symptom-related issues being addressed.

As the child moves closer to their 18th birth date or begins to experience more symptoms typically associated with adults with PWS, some parents of children not quite in their 18 may choose to also join this eSupport Group in order to receive additional insight and support from more “experienced” parents and care providers. (We believe that parents of infants and young babies will not find higher-aged eSupport Groups helpful. We therefore discourage parents of infants and babies from joining higher age eSupport Groups until such time as is appropriate.)

For more information or if you have questions about PWSA’s 18 and up eSupport Group, please contact the PWSA (USA) office pwsausa@pwsausa.org or call 941-312-0400 or 800-926-4797.

To subscribe to this list - send an email to: PWSA-USA-18andUP-subscribe@yahoogroups.com

or with a Yahoo ID and password go to http://groups.yahoo.com/group/PWSA-USA-18andUP/ 

To register for a Yahoo ID and password go to: http://help.yahoo.com/help/us/edit/edit-01.html