Families
for HoPE, Inc. has some exciting news to share!
The Carter Centers
recently received funding to write and distribute an “HPE Parents’ Handbook”. Families for HoPE is pleased to collaborate with them on
this special project that we hope will give knowledge and encouragement to
families affected by HPE.
The
HPE Parent’s Handbook will be available to families affected by HPE, their
physicians, therapists and teachers. It will also be provided to family
resource libraries at hospitals, clinics, and schools. It is our hope that this
handbook will be maintained in a 3-ring binder so that it can be easily updated
as new research or information becomes available.
The
HPE Parent’s Handbook will be a joint effort between Families for HoPE and the
Carter Centers. There will be a basic breakdown into two parts: a clinical
perspective and a personal perspective.
The
medical staff at the Carter Centers will be responsible for writing the
clinical and medical material in the handbook, and Families for HoPE will
review the content to be sure it is easy to understand and not overly complex
from a parents’ perspective.
Families
for HoPE and YOU--the parents of children with HPE--will be responsible for
writing stories about your experiences with your child and family, as well as
suggestions and advice from parents about coping, hope, loss, acceptance and
more. We also would like to include photos of our kids and their families.
To
help accomplish this major project, we need your help!
Over the course of
the next several weeks, we will ask 1-2 questions per week to seek your
thoughts, experiences, “words of wisdom,” etc. on a variety of
topics. These questions will be available to answer in several
ways: e-mail to families in the Families
for HoPE database; posts to the various Yahoo groups for HPE and HPE loss; and
a dedicated page on the Families for HoPE website.
We hope you all choose to participate and to
help other families who have similar concerns and experiences to your own.
Any
answers to questions, comments, or correspondence regarding this project can be
sent to Handbook@FamiliesforHoPE.org.
Due
to HIPPA and privacy concerns, everyone who submits a photo or writes
information for the handbook will be asked to sign necessary release forms in
order to be recognized in the handbook. If you would prefer to remain
anonymous or use a name other than your own, please contact us and we will work
with you on that.
Families
for HoPE is very excited to be working with the Carter Centers on this valuable
endeavor, and hope all of our families will participate and make it a success!
Look for the questions weekly and please answer as many as are pertinent to you
and your family. Due to limited space not every answer will be printed, but we
will try to get a range of opinions on all the topics chosen.
Thank
you in advance for your participation from the Families for HoPE board members!
Leslie
Harley, Heather Stauft, Roxanne Steele, Shira Arnold and Amy Colletti
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