Dear Sherri and All,

We are here ,and all is ok, but our dates have been moved up for our
NIH trip to July 30-August 3rd. Sherri, will that be when you will be
there? It will be fun to see you all again!

Seth had a stomach bug this weekend, but otherwisre is doing ok. He
sees the rheumatologist (we finally have a good one here) tomorrow.
It is his routine visit, but it will be good to have him seen tomorrow
due to the illness.

The NOMID Alliance is up and running, and is official in California,
and I need to finish some paperwork for the tax exempt status, and
have some meeting on line or over the phone with the board people. It
has been a challenge with the distance, and I hada lot going on in
June, so I have not gotten all things done yet for the tax froms, but
will submit hopefully by the end of the week, if I can get all the
board people to vote on some things.

Dori, are you out there? I will try to call you today about the NOMID
Alliance.

It has been hard at times to get it all going, on top of life, but we
are at least going and are a non-profit, and I need to start
fundraising more. I have also been trying to de-clutter our apartment
in my spare time too, and we are in the process of adoption paperwork
and evaluations (we have been trying for years for another child, but
since Seth, only lots of miscarriages so we have decided to try to
adopt), so there is a lot of things going on in my life,in addition to
the NOMID Alliance and the usual stuff. However, it is all good, and
will all get done, but there is never enough time to get things all
done as soon as I want!

So that is why no one has heard from me much, but I think of you all
the time, and am trying to get things going. So much is getting done,
but you cannot see me here, doing budgets, reading textbooks on legal
stuff, fundraising, non-profits and tax forms (I feel like I am in
college). I welcome any suggestions, ideas and insight for the NOMID
Alliance! I am thinking of doing some low key fundraising efforts as
a family and with friends at first, while waiting for full tax exempt
status. I may do a garage sale, and donate the profits, or a bake
sale or something soon. Not big things yet, since I have not had the
time to plan that well, but all helps. We need big fundraising, but I
need some support for that, and have not gotten things together enough
for that yet.

My next big goal is to get the survey online, and work on a brochure
and awareness campaign literature, since that is in demand right now
from families, and medical people. I have given out tons of business
cards with the NOMID Alliance info on it to doctors, and anyone
interested. If any want some info. cards, let me know. Maybe I can
make a file online that people can print at the website with the info
to print, cut and share with others.

I am motivated, but get sidetracked with life! We are making
progress, and have a lot of hits on the site every month. I have hada
couter on the site since April, and we are getting at least 100 hits a
month. Not a ton, but considering things, that is not bad. We will
get more one we get this campaign going.

So, that is what I am doing, and anyone else interested in jumping in
or giving input or direction to me will be greatly appreciated!

Karen Durrant