|“Cosmos“( RTS Family Support Group Japan) was
voluntarily established in
September 1994 by four
mothers whose children with RTS were going to Kanagawa
Children’s Medical Center genetic department,
with intention to support each other by exchanging experience or
information about child care.
Our activity is mainly to aim at supporting each other so that the children
and the families affected by RTS live happily. Secondly we aim to have
this syndrome recognized properly by people engaged in medical care,
education and/or welfare.
For the aims we arrange annual family get-togethers and studying sessions,
put out newsletters to members regularly, circulate hand-written-notebooks
within small groups and exchange information in internet and so on. .Through
these activities we exchange the know-how of everyday life and the latest
medical information provided by doctors. It will be the great support for
the families to share the joy and anxiety of child care with the members,
who are quite few and live remote from others in Japan.
We continue to strive to relieve
uneasiness of the members by getting more information and knowledge with
advice of doctors and tackling many difficulties (medical care,
education, welfare) of child care.
Currently we have 88 members whose children are from 1year old to 35 years
word “cosmos” has several meanings such as universe, harmony and a kind
of flower. This support group
was founded in autumn of the same year as the astronaut Chiaki Mukai took off to the universe. Our group was named after that big
event added with the meaning of the infinity of the universe
and the gentle image of the flower.