Hello,

Becky, I am glad that you all made it home ok, and I hope that your
headaches get better soon! Seth just got the letter from Tiffanie,
and is working on one to send back to her. We were all very impressed
with her beautiful calligraphy writing! She is so artistic! We are
scheduled to return to the NIH foir a few days during the week August
12-16. When are you going? Jennifer Earnhart would love to meet you
too, so maybe we can get us all scheduled there at the same time. Let
me know when you are going!

I have just heard from Fran that many of the funds for HIDS and other
syndromes at the NIH are being cut, and that they are losing their
drug coverage for treatment from the NIH! Unless the ycan get the
treatment through their insurance, they will lose their medications. I
had also heard weeks ago of cuts with the studies with FCAS but I have
not gotten much detail about this. Has this happened with the NOMID
families? Look at the PTAPA yahoo group post on this matter for what
is going on, but it is scary and so disturbing.

We may need to do more advocacy and letters soon if this hits our
studies too, but I feel that in many ways we are all in the same
boat,and if theire is anything we can do to help bring awareness to
this issue, it will be inour best interest too. Maybe media coverage
will be good? Any suggestions?

Talk to you soon,

Karen