Honey here is the email address for the MDS coordinator LF. Her name is Rebecca.
MDS@leukaemia.org.au
If you go to Talk Blood Cancer, click on forum, scroll down to MDS, then look for posts by Rachael.....you will see her story with del 5q and how she was helped to get compassionate use of Revlimid.
Last I heard from Rachael she was doing very very well on the Revlimid. When people stop participating online or on the telephone forums its a good sign that they are feeling well.
Chirley