Dear Kate and Michelle,

Thanks so much for all the chats and fun on the NIH
visit! I am so glad we got together, and wished we
had more time. I too have been milling ideas in my
head about a foundation, fundraising and all, and also
about getting the word out to doctors. I have not
forgotten our chat, Kate, about our little survey! I
will be in touch about that in the next few weeks. I
am going to do some research and see what has been
done already, then get to work on it.

The website I learned about was geneticalliance.org
and there is so far, nothing on it about NOMID/ CINCA,
Muckle wells, or Familial cold uticaria. It is a site
that is a starting point for people to look up
information on genetic disrders, and people can post
their websites, foundations, etc. on it relating to
their genetic disorders. They are also supposed to
have tutorials about setting up foundations, and hold
a seminar/conference on stuiff each year. I need
more time to look into this too.

Michelle, I did get some photos in the billards room
of our boys, but never got them still long enough to
pose! Also we did take photos with Alex and Abby, but
never the whole group of Alex, Kieran, and Seth
together. Too bad! I tried finding you all the day
you flew, and was looking everywhere between
appointments, but no luck. Next time, we wil grab
them and do photos immediately!

I know karen Moore mentioned interesting in helping
with ideas and stuff for fundraising, and anyone out
there is also welcome. I think that it is the next
step, and am thinking it will really help with getting
fundraising for a conference and other things for this
syndrome.

I agree, everyone call the NIH to have your children
seen! Lisa and Colin, you are in our prayers, please
let us know what is going on for Fynley! Kate and
Michelle, I am also keeping your boys in our prayers
too, and hope the surgeries go well. I am amazined at
all the energy and things you are able to do Kate,
considering everything. I am sure with dealing with
Alex's school IEP issues, and medical stuff, painting
must be a welcome break. How do you get away to do it?

I cannot wait to hear about when John and the kids
will be here in SF. Ny older son, Ethan (8) really
wants to meet them, and Seth wants to see his friends
too. Let me know of the travel dates, and if they
want to get together for some sightseeing in the city.
We would love to show them around. I think they will
have such a great time in Seattle too, and I hope the
train ride is fun. It sounds like a great adventure!

I will be in touch, and will be trying to find some
deep pockets out here to help the fundraising. No
promises, but I am going to try to get things going.
My husband has a few contacts that are influential
people, and I hope he can get them interested. I
also noted that Amgen (the makers of Anakinra) has a
Bay area branch, and wonder if I should visit them
sometime?

Best wishes, and have a great week!

Karen Durrant



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