Having problems with message search?
Hi,
everyone!
I just
wanted to thank our chapters for their efforts to help serve the families in
their state.
Why join the state chapter?
The national
organization, PWSA (USA), works to fund and support research, advocate on a
national level, increase awareness, provide crisis counseling, among many other
services. Your state chapter has the expertise needed to deal with issues
that are specific to your state such as Medicaid waiver programs, Medicaid
services, knowledge of health care providers in your area, and resources to
help educate the personnel in your child’s school and supportive living
arrangements. The state chapter also will hold educational meetings close
to your home. These meetings provide an invaluable opportunity to receive
support from other parents. The state chapters need your support to
continue to be successful!
What if there is no state chapter in my state or my state chapter is not
very active?
E-mail me, bmcmanus@..., or call me,
941-487-6734 or 800-926-4797. My goal is to have a chapter in EVERY
STATE! More than one local support/focus group can exist in each state,
but we need to join together to represent the families of the state.
Increased
awareness and earlier diagnosis are increasing the number of people we know who
have PWS. Many of these individuals are young, under the age 18, and the
resources of our states will be strained as they try to support the needs of
these children as they grow. We cannot wait until they all reach
adulthood to become actively involved. Please consider helping me reach
my goal! Call me today!
What is happening in my area?
Please look
at www.pwsausa.org/conference
to see what events are planned in your area.
Barbara
McManus
Director of Family Support
Prader-Willi Syndrome Association (
Telephone: 941-487-6734 or 800-926-4797
bmcmanus@...
www.pwsausa.org
Please note that the person sending this email is not a medical professional.
Information in this email is not intended to be, nor is it, medical advice on
the management or care of a person with Prader-Willi syndrome. Any
opinions expressed are those of the sender alone, and may not represent
the opinions of PWSA (USA). This email is intended to provide
information only - not to diagnose or advocate particular treatment
options. Any decision about treatment options (including, but not limited
to, medical, nutritional, therapy, or psychiatric options) should be made in
consultation with your own medical team.
Offline 
Send Email