Youth Chats...
Youth PH Chat
Tuesdays @ 5:30pm PST (8:30pm EST)
Due to the nature of these chats, additional safeguards
are in place -- if you are a youth under 21 with PH and are
interested in being part of this chat, please contact
PHA at web@PHAssociation.org.
A Children's Book Every Adult Should Read
(Easier Lifestyle) United Kingdom
-- A new children's book tackles the tricky subjects of severe illness
and death through the eyes of a nine year old whose Nana is dying of
the rare illness, Pulmonary Hypertension (PH) and a Stroke. In My Nana
Is An Alien, acclaimed children's TV scriptwriter & producer, Diane
Whitley manages to convey, with humour and compassion all the fears and
doubts that any child might have when things haven't been explained to
them properly leaving their imagination to run wild.
Parents: Help PHA Help You
Are you a parent of a child
with PH and live in the U.S.? PHA is working with a group of parent
volunteers to understand the kind of services and programs that are
most important for YOU, your children and your family. Please help us
better understand the needs and wants of the U.S. PH pediatric
community by participating in a brief research project that will be
conducted online. You would login to a secure site, once a day for
three days, at a time convenient for you, and share your thoughts and
opinions. If you are interested in participating please contact Sarah
Gawlitta at PHA at 301-565-3004 x127.
Help Websites for Kids..
COTA
Children's Organ Transplant Association. COTA's primary mission is to
ensure that no U.S. citizen is ever denied a life-saving transplant
or access to a transplant waiting list, due solely to the lack of funds.
Our secondary focus is to promote organ donations and to provide public
education on all aspects of the organ donation process. www.cota.org
or 1-800-366-COTA, 2501 COTA Drive, Bloomington, IN 474403.
Starlight Children's Foundation
This international organization offers three outpatient and inpatient
programs to seriously ill children: wish granting; "Starlight Rooms"
(in-room entertainment), and "Fun Center" (mobile entertainment units).
This site contains information on each of these programs as well as
contact informatio for Starlight
Make-A-Wish
Foundation® of America is committed to making sure that every child
with a life-threatening illness has an incredible wish experience that
provides hope, strength and joy.
Family
Voices
Aimed at families and friends of children with special health
care needs. A nonprofit group, their site has useful links
(some in Spanish), information on government programs, etc.
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