Hi Karen

I'm still having email problems.

The links both appear to have been archived.

I think I've added a photo of the front page to the files section.

We do have a PDF of the article but I can't seem to upload that.

We do have the TV story recorded on the vcr!

Louise

Tom in Australia's mum


--- In nomidsyndrome@yahoogroups.com, "sfokaren2003"
<sfokaren2003@...> wrote:
>
> Hello to all,
>
> This is a long shot, but if any of you will be near the NIH, or
live
> close enough to visit the NIH tomorrow (Friday July 28 around noon)
> call Dr. G! She can explain it to you, but there is someone very
> important (no idea at all who or what this is about) wanting to
meet a
> NOMID patient tomorrow, and there are non NOMID patients at the NIH
> this week. Too bad there was not much notice, or this person
doesn't
> have a more flexible schedule, since so often there are some of us
out
> there!
>
> I think that someone with NOMID lives in Maryland, but I am not
sure
> if they go to the NIH.
>
> Had I known sooner, I would have tried to make plans to move up our
> trip, since this could be a very good thing for increasing
awareness
> about NOMID, and these things do not happen very often, or ever!
>
> Again, no idea who this is, or how important the VIP is, or how
much
> it will be of benefit for increasing awareness for NOMID, but I am
> just hoping that someone may be able to make it there!
>
> By the way, the NOMID Alliance is in the final top pick for the
> LegalZoom.com non-Profit of the Year Award! I will let you know if
we
> win, or not next week, when they announce the winners. The prize
is
> $5000 grant for the non-profit. I never thought that we would be
in
> the running! Keep your fingers crossed! The money would go towards
> printing a brochure about NOMID, FCAS and MWS to be sent to
specific
> doctors that take care of kids that have these syndromes and may
not
> even know it!(Neonatologists, Allergists, Rheumatologists,
> Dermatologists, etc).
>
> What an exciting week for NOMID, and awareness for these syndromes,
> from Australia to the USA. Louise, please send me the links for
the TV
> and newspaper bits on your son! I have been trying to search for
the
> m online, to no avail. I wish I knew who the VIP was that wanted to
> meet a NOMID patient. If they had even called me yesterday, I
would
> have been able to make it, but now the only way would be a red-eye
> flight, and insane packing!
>
> Well, I hope someone shows up, or they reschedule a meeting another
> time! Who wants to meet us??? Why??? Are they a politician, a
> celebrity or a medical person???
>
> If nayone figures this out, please post!
>
> Karen
>