----- Original Message -----
Sent: Tuesday, March 16, 2004 5:26
PM
Subject: Re: meeting
Hi Ya Sue
I just got of the phone from a Paul &
Christine Coxon, they have 4/5 year old son who was just recently diagnosed
with fragile X they heard about the meeting through Genitec Services at PMH
and he and his wife will try to attend they are from the UK also, they have no
other family here so they are rather desperate for info about support net
works etc...
I will start the phone around this week, the
meeting place is still Hampton Rd Nedlands right?
Seem's like we are finally getting the message
out there now.
I saw the notice in the Kalparrin newsletter also
and it was in my latest LAC Newsletter also.
Will Let you know how things progress after the
phone around
DEBS
----- Original Message -----
Sent: Tuesday, March 16, 2004 12:09
PM
Subject: re: meeting
G'day all
Just wondering how things are going with you
all?
I have so far got new members: Jodie Morton,
Raphaela Lauzon-Guevarra, and F. Fontana & M. Powell - these are new
family members to whom the message has got through.
The people at Rheola Street and DSC will be
mailing out this week too so hopefully we will get a few more.
In addition I have had responses from other
interested people: Mariette Boelema (an accommodation officer), Scott
Andrews (Kinship organisation) and David Ravine (Prof of genetics - he came
to take blood from us last Sunday for the research into testing for
Frax)
Of our old list so far is confirmed (all being
well): Janet Ackland, Wanda Finkle, Adele Scott and Ian Lyon. Haven't
rung the others yet - have any of you rung your lists? Or had any
calls from any others?
I have responded to the e-mail from Jonathon
Cohen and we are now linked with the USA foundation.
We are members of the Genetic Support council
(where we will be meeting) and are listed as links on all the
Australian websites. Fragile X was featured on the front page of the
Genetic Support Council newsletter - which I received a copy of last
week.
Jack returned to the family fold yesterday - a
little paler than usual but glad to be home I think - he is OK.
Janet's boy seems to be doing well too although has a very long road ahead
of him.
Let me know how you're all doing and can we
make a time to meet up prior to May 1st? What's good for everyone? I
would prefer NOT a weekend - evenings are good or during the day if we can
all find a mutually convenient day.
Cheers, Sue
Susan & Mark
Cudlipp
