Hello to all,

We got called this week by Nikki to change Seth's follow up trip to
the NIH, since Dr. Goldbach-Mansky will NOT be at the NIh the week of
AUgust 12-16th (our original trip). Nikki said that she would be out
during part of August, so I thought I would let you all know, so no
one has any issues with their travel like las year!

So now Seth is going to the NIH July 8-11th. Is anyone else going to
be there? My husband will be the one taking Seth this time, but it is
a short visit, no MRI or LP so he will do ok. My husband has not gone
to the NIH alone yet, but came with us all on our first trip in 2003,
but a lot has changed since then.

So far, so good for Seth these past few months, and he is in another
opera with the San Francisco Opera company called "Don Giovanni". He
is in the wedding scene, which is fun, compared to some of the other
scenes that are not so pleasnat, but it is a beautiful opera. He is
so excited to be back on stage again, and opening night is this
Saturday. He may do some more parts in the fall too, for other opera
productions, but we shall see.

I am now 16 1/2 weeks pregnant, and all is ok, and next week we have
our big ultrasound. We are thinking of finding out what it is, but
since they were wrong with Seth 3 times (thought he was a girl, but
everyone was not sure how they missed boy when they saw him come out
clearly a boy) and with Ethan we did not find out, we are still trying
to decide. Everyone in the family wants to know, of course, and so
are we, but I just hope that they get it right if they can tell what
it is! I had some issues with a large ovarian cyst a few weeks ago,
and major vomiting and nausea for weeks now (getting a bit better, but
not much) so I have gotten behind on stuff. Luckily my nurisng work
is winding down, and all the stuff with the kid's school projects, etc
and life is finally slowing down, so I can write!

I have thought of you all a lot, and hope that everyone is doing well.
There was a article in the May 21st Forbes magazine that we were
interviewed for (but they unfortunately never mentioned the NOMID
Alliance or the web site, despite my request) about Novartis and
Regenron's new drugs against Il-1 that are being tested on FCAS and
MWS. They did a side story about the syndromes, but it was not as
clear as it should have been , but was ok. Any exposure is good, but
it is too bad they did not give webiste,s but Forbes is all about $$$
and investments, so the main article was "Tiny markets, Big Bucks"
about why drug companies would even bother making and testing drugs
for such rare syndromes like FCAS, MWS and NOMID. It was more
positive than I first imagined, after 3 interviews with the author. I
feared he would take the negative, but he ended up finding the
patient's stories so touching and interesting and decided to do the
little side story about people's experiences (that is the only area I
was quoted in, despite 3 interviews trying to help answer many
questions about the synromes, etc.) which was good.

The article is mostly about FCAS and MWS, and not clear at all on
NOMID, but hopefully it will help awareness for all the syndromes.
These new drugs, especially the one from Novartis, sound great yet the
drug companies have not yet tested them on NOMID patients, or tested
how they work on controlling brain pressure, etc. They companies want
to get the drugs approved for FCAS and MWS firtst, then try to market
them to other more common inflammatory conditions in the future. It
will be good for FCAS and MWS people to have drugs FDA approved on
lable for these syndromes-a first, but I hope that testing for NOMId
can come along too. The NIH is pushing for testing with these drugs
for how they impact the brain and CNS system, since this is the
biggest concern with NOMID, since there are many more issues with
NOMID, but FCAS and MWS do not affect the brain and CNS.

The Novartis drug, a monoclonal antibody injection, is my biggest
hope, since it has show amazing results in a small group of MWS
patients. The people got one shot of the drug, and then doctors
waited to see when they would have flare symptoms return. They were
SYMPTOM FREE for almost 200 days after the one shot! The future
protocol will hav people getting one shot every 8 weeks, which would
make life infinately easier for people. If it works that well in
NOMID, it could be a huge thing for patients! I could see them giving
this in the future to infants to treat NOMID, like a vaccine every few
months. Can you imagine how much suffering could be prevented?

Anyways, luckily the Anakinra is still available and helping, but Seth
has lately been a real fuss about his shots with more pain with the
injections than in the past, so the thought of one shot every 2 months
sounds pretty good! I guess you would have to post it on the calendar
to remember to give it, wouldn't you? It is hard to imagine, and
exciting to think that some company is even making this, and cares. I
plan to contact Novartis in the future. Regeneron's Il-1 trap drug
will be out on the market hopefully by the end of the year, and will
be the first FDA approved drug for these syndromes, and is working
well for many FCAS and MWS patients. No testing on NOMID has happened
yet for that drug, but it is given weekly, which is nice too. Thank
goodness there are options out there now!

Have a great week!

Karen Durrant