Dear Karen A. and Louise,


First I must say I am so sorrry for you Karen-

Thanks for your postings, and my heart goes out to you Karen. I am
out of town for a few days, then we go home, then are going back to
the NIH on Sunday the 30th. I will try to call you one of these days
once I am back.

Seth had some reactions like that within 24 hours of his withdrawl
protocol at the NIH, and was off the drug for 4 days. It was so
scary, and he was begging for the medication back (even though he
hated the needles at the time). It made him aware of how much he did
need it, since once he got onto it, he was doing so well that he
seemed to forget life pre-Anakinra. Seth did not have febrile
seizures, but vomited bile for hours, had fevers, terrible head pain,
red eyes and light sensitivity, headaches all that were even more
severe than flares before the Anakinra started. It was as if his
body was going into extreme NOMID as a reaction to the drug
withdrawl, and it was terriflying.

I am so sorry that you had to experience this, and I hope that you
called the NIH to get help on it, and gave the drug as soon as
possible. I fear ever mising a dose after what I have sen (and even
have a one month extra supply in the fridge in case of something
happening to disrupt supply of the drug for awhile). Yes, a bit
paranoid, but considering the world these days, and how badly our
kids depend on this drug, it gives me a little more piece of mind.

I am so sorry about your friends' murder and death. I agree that is
a hard thing to deal with, even more than death from natural causes
or tragic accidents. How horrifying that her husband did that, and I
weep for her children too. I will have you in our thoughts and
prayers and her children too. I am so sorry.

Dear Louise,


I am so glad that your son is doing well, and what an honor to be a
miracle boy on TV and in the newspaper!

Wow, I would love to see what the articles and any links to the TV
spot were like! Thanks so much for mentioning the NOMID Alliance
too! We are officially a non-profit in California, so we are
legitimite for all places,and I am awaiting completion of some tax
documents for the government to gain IRS tax exempt status, so we can
offer donees tax write-offs for their donations. Also, we can then
go approach companies, (AMGEN, I 've got you on the top of the
list!). Until we can go international with branches in other
countries (more legal work which costs money) I am not sure how tax
exempt status works for people donating from out of the US, but we
appreciate all the help we get.

I submitted an application for a competition with the legal services
group I used for the documents for their annual "Non-profit of the
Year Award" $5000 cash grant. It is along shot, but they e-mailed me
the application to enter, and I felt proud to even have the chance.
Fingers crossed, and if we do win it, the money will all be used to
start the Awareness campaign to make a brochure to have sent to
docitors that deal with these children, and are not diagnosing them
early enough. Neonatologists (newborn ICU doctors), Rheumatologists,
Allergists, Dermatologists, etc.

Also, I asked to print more, if we get the grant, so families can
have literature to give to their doctors, teachers, etc. Also, I
want to get it translated into Spanish, since a few families in the
US that I have met are Hispanic, and some have had great challenges
to getting diagnosis and care.

Thanks again for promoting the NOMID Alliance! Anything helps!
Please if you could e-mail those links to me, I can post them on the
website, and list them in a new area (I need to make this area up on
the site, but plan to soon).

I am so new to all the legal stuff, and have learned a lot, but it
takes me awhile to get hings correct. I fear not doing things
right ,and messing up, so it takes me awhile to get all of it right.
The government sure makes it hard sometimes to do good in the world!

I am also reading a NOLO book on Fundraising for Non-profits, but
have not gotten far yet. I have 2 other books on forming Non-profits
with lots of post-it notes marking things I still need to do, but
things are going well. We will start having our official meetings
for the board soon, but I need to figure out how to do phone
conferences, or online ways so we that are involved can do it.

I too have missed everyone's postings, but figure everyone must be
doing well, and having a fun summer!

Sherri,

I look forward to seeing Miranda, Sherri and the whole Putvin family
next week at the NIH! The Children's Inn called to ask if we could
have Seth photographed, and interviewed for their Annual report, and
possibly the website. I mentioned that Miranda would be there too,
and has the same syndrome, and asked if they would call you all to
see if you wanted to do this too. The more exposure the better for
the NOMID syndrome! I personally dread the photo op, despite my
efforts to diet over the past few months, and hope I can ask the
photographer to photoshop alter me slimmer! HaHa!

We are arriving on Sunday evening through Reagan Airport, but will
not get tothe Inn until possibly 8 pm. I am so excited to see you
all, and any one else there too. Sorry that the NIH changed things
so I cannot meet Becky or Jennifer. We will have to work on getting
things coordinated for another trip.

Karen Durrant