0-5 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, birth to 5 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 0-5 eSupport Group list should be parents, extended family
members, and/or caregivers of children with PWS aged birth through five years.
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; and
Teen Years. There is also a Sibling eSupport Group. Support and
input on the 0-5 eSupport Group is welcome from care providers and parents of
children of all ages, with age-related issues being addressed.
As the young child moves closer to school age and/or begins to experience
more symptoms typically associated with older children with PWS, some parents
may find it helpful to also join the 6-12 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 and indeed may find them detrimental. Parents of
infants and babies, therefore, are discouraged from joining higher age eSupport
Groups until such time as is appropriate. Parents of infants and babies
may remind themselves and take comfort knowing that their children may very well
benefit from ongoing research that will lead to new therapies and treatments not
currently available.
For more information or if you have questions about PWSA’s 0-5 eSupport
Group, please contact the PWSA (USA) office online pwsausa@pwsausa.org or call 941-312-0400
or 800-926-4797.
To subscribe to this list - send an email to:
PWSA-USA-0-5yr-subscribe@yahoogroups.com
or with a yahoo ID and password go to
http://groups.yahoo.com/group/PWSA-USA-0-5yr/
To register for a Yahoo ID and password go to:
http://help.yahoo.com/help/us/edit/edit-01.html
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