Dear Everyone,

If you need to call Janet Jones, her number is 1-877-278-4330. Her fax
is 1-301-480-0676. All they need to start the process of booking an
appointment is a letter from your doctor, with a summary of your
child's history, and copies of pertinent medical records. To get our
appointment, we actually faxed an older letter from some of our son's
doctors that we had on file for other referrals, copies of recent labs,
the genetic report, and other pathology reports and pertinent parts of
our son's medical chart. We did this because there was a really cheap
deal to fly, but we had to book the tickets on Southwest the next day.
Our doctor just mailed all the rest of the stuff last week, and also
faxed a few things for us so we could get hooked into the system (and
save a bundle of money on the plane tickets). Janet Jones was very
helpful, and was very willing to help us expedite things so we could
book our plane tickets quickly. Normally, I would have waited for the
doctor to mail everything, etc. but we got tickets for $160 total for
each round trip from San Jose, CA (1 hour south of San Francisco, where
we live) to Baltimore /Washington DC Airport! This was a huge savings,
and got me motivated to get things in order quickly to set our
appointment dates.

If any of you are contemplating going to NIH, the Reagan International
is the closest, but we were looking for cheap, so we will enjoy the
longer NIH airport shuttle from Baltimore, WAShington instead. I am
sure that if you keep a lookout for good deals, more will come up soon,
considering the state of the world right now. I have worried about
travelling during this scary time, but everyone keeps saying that it
will probably be ok, since they have got tons of security around DC
now, and extra missles and air force jets stationed all around there,
so maybe we will be better off there than here in San Francisco! We
are hoping and praying that the world will not suffer more terrorist
attacks, as threatened, and things can be better soon.

Best wishes to all, and thanks for your help and support!

Karen Durrant

P.S. Belinda, we would love to get together with you and meet while at
the NIH. I e-mailed you a note, but I don't know if it really posted
to you via this egroup. It is impossible to know that the message was
sent or received, if you send a direct letter to someone, and not the
whole group.
Karen