In February 2004 four families met at the
instigation of Dr Ian Jefferson at the American Hospital. He offered
a room for families to meet and give each other support.
Since then the group has grown enormously to over 100 members, 25
nationalities, our children ranging from birth to 35 years! This
requires widespread coverage over many areas to ensure that the
specific need of each individual member and their family is met.
In the past, we have welcomed professionals from overseas to conduct
lectures and conferences which have proven very informative,
involving both the educational and medical sectors. Social events,
walks, fun-days and the arts are high on our agenda creating
opportunities and fulfilling some of the hopes and dreams of our
members. We fully intend to continue with these projects.
Consequently, this amount of involvement entails a tremendous input
from administration, organization, to hands-on help. At the moment
we rely heavily upon the goodwill of volunteers within the group to
carry out the many tasks. There are four key persons who make
decisions and each one is delegated to a specific section.
