For many years, we ran a very unique listserv (email list) for
Apert syndrome. We also had a Forum where members could post photos
and thread messages. Time and technology march on, and it became very
difficult to keep the listserv operating - hosts began to discontinue the
service due to other forms of communication becoming popular. Social
media has moved in and taken over in a big way, and alas, the Apert Listserv
and Forum have been retired. But fear not! All of the same
wonderful families are waiting for you on Facebook in our very exclusive
closed group, Apert USA.
(Note - you must be logged into Facebook for these links to work). The
Facebook format works very well - our thoughts and photos stay around
forever and are searchable - many of the headaches involved in email are
eliminated.
To join, send a friend request to
Don Sears or
Cathie Sears and if we
don't already know you, either an email or facebook message telling us who
you are. You must either have Apert, Pfeiffer, or Crouzon syndrome or
be the immediate caretaker of someone with these syndromes in order to join
this group. There are other groups available for general
craniosynostosis and similar syndromes.
