Dear Becky,

I hope that you are feeling better, and get out soon! Sorry that we
did not get to visit with you as much as we did with your grandmother
and daughter. I wanted to come visit after our appointments on
Friday, but Seth's schedule kept changing, aso we were stuck at
appointments until almost dinner time, and he was tired, and wanted to
go back to the inn.

We have your address and e-mail, annd phone number, so I will try to
call you in the next few weeks. It was so great to see you finally,
and see the Putvins again. I hope they made it home ok in the weather
too! We are supposed to return to the NIH the week of August 13th. I
think that is when the Putvins are coming too! It would be great to
get more of us in one place, and I may bring my older son and husband
along this summer, to sightsee after, so maybe I can see people coming
the following week too.

Seth says hi to Tiffanie, and they had a good time together. He wants
to wrtie or call her sometime too. he really had a lot of fun doing
arts and crafts with her, since it is one of his favorite things to do
there!

To all,

We just flew home from Chicago late last night, so I kept Seth home
today from school. It has been a nightmare, and we were already
sleep-deprived from the NIH early morning appointments (and jet lag
since 7 am at the NIh is 4 am in California). We were supposed to fly
through Dalls, but that flight got cancelled, and they sent us to
Chicago, telling us all was fine there. NOT! We got there, and they
cancelled our flight to San Francisco due to weather. Then we got
onto another flight, which was cancelled, then we were booked onto a
flight to Portland with a next day flight from Portland to San
Francisco, but then that got cancelled.

So, by then, everything was cancelled going west, and we had to sleep
in the airport (try to sleep that is) and wait in lines until midnight
for getting on standby lists, then lines for cots, lines for blankets,
and a line for pillows (which ran out). Think old Soveit Union lines
for blocks when people were trying to buy toilet paper, etc, and that
was what it was like!

I had grabbed a large wheelchair as soon as I found out the last
flight was cancelled, and bundled up Seth in it so he could start to
sleep, and be wheeled all over asleep while I waited in all the lines.
He was a good sport, and actually slept that way, then was still
asleep when I put him on the cot at midnight. Then at 4 am they came
around to take away all the cots and blankets! So Seth went back to
sleeping in the wheelchair, and I pushed him all over the rest of the
night and a lot of the day yesterday while we ran from gate to gate as
they changed them, trying to get on the standby lists.

I tell you, it is depressing how things are nowdays! Basically, no
one cares if your kids has just come out of the NIh, had LPs and still
has his hospital armbands on, and is getting low on their medications.
We are members of the frequent flyer miles for every airline we fly,
and I even have a credit a card with American (which was who we were
dealing with) but no one would help us, in person or on the phone.
They put executive'first class peole, international flights and people
with elite/platinum membership as a priority all the time, and we were
at the back of the list. We were nice, and patient, but I could not
believe that they thought it was more importnat to keep the fat
wallets happy than to risk having my son in the airport for 2 days,
and we were getting ice from Mc Donalds to keep the kineret cold, but
I did not have but one more needle for shots, since I had only planned
for a 2 day beyond our trip need for suppplies!

Luckily, we got on the last flight last night, since they brought in a
big plane and there were seats, but it was stressful. IF we had not
gotten on that one, we would still be there! They did not offer us
any accomodations, food vouchers, or nothing because they do not have
to if you are stuck due to weather. I could have left and paid for
the closest hotel the Hilton (as if I can really afford that!) but
since I had not valid flights on paper anymore, they were restricting
people coming back into the airport, so we stayed.

Seth was a good sport, and liked the idea of having Mc Donald's food
for many meals a lot. We did eat a lot of juice, fruit and salads to
make up for the burgers and nuggets, but it is hard to find other
foods that he can have due to his food allergies, so we were limited.
Thank goodness they take credit cards now, becasue I ran out of much
cash, since I was not able to get vouchers at the NIH, and also paid
for the metro to get to an from the airport in DC because the shuttle
was not running when we arrived late on Monday, or on Saturday. I
could have pushed hard for a cab, etc. but I know that there are
budget cuts, so I was not going to push too hard.

So, warning to any traveling soon, bring extra meds, and diapers or
whatever you need, and have it with you at all times! We have had
many flying issues due to weather but this was the worst.

I am thinking of asking Dr.G. to write a letter for all of us to carry
that says we should have priority for flights, ude to medical needs,
because this was ridiculous. Luckily Seth was stable, and was doing
better on this trip post LP and everything than he has in years, but I
cannot imagine the horror if this had happened to some of the other
more severely affected children!

I am sure that they are bombarded with people's issues, but I could
prove our story was true, with Seth's armbands still on, and all our
paperwork, but no one cared. I considered calling Dr. G about it, but
we luckily got out last night.

Dori, I thought of calling you, but once I found out I needed to stay
there to get any hope of getting a flight home, I didn't bother. IT
would have been fun to meet you, but under the circumstances, ti was
difficult. Thanks for sending the bylaws signature page! It was on
the table in a stack of mail when I got home, and that made my day.
Now we can get the IRS forms in, and all.

We are happy to be home!

Karen

Hi everyone!
We got home a day early from NIH, so I was happy about that! The
drive home was great! No new snow!
Karen, I am so sorry to hear of your episode at the airport! That
must have been horrible! Especially after being gone all week and
all you wanted to do was to just get home!! I am glad you made it
back safely! Say hi to Seth for us!
It was good to see you again! And to meet Becky and her daughter and
sweet grandma!!
Question about CSF.. normal range for protein in the CSF is 15-40,
Miranda's is 244. I went through all her blood work over the years,
she has never been below 200. I asked Dr. G, she said she is going
to look into this. Does anyone else's child have these kinds of
readings? Has anyone heard of it? I am kind of worried, but I guess
more curious as to why they are always so high.
I don't have much time tonight to write, got to finish cleaning the
dishes, I worked all day then we celebrated Jimmy's 16th!! Steak on
the grill and ice cream cake!! Plus I have a terrible cold and I am
really tired!
Hope all is well with all the children!!
Lots of love to all,
Sherri

Dear Becky,

I hope that you are feeling better, and get out soon! Sorry that we
did not get to visit with you as much as we did with your grandmother
and daughter. I wanted to come visit after our appointments on
Friday, but Seth's schedule kept changing, aso we were stuck at
appointments until almost dinner time, and he was tired, and wanted to
go back to the inn.

We have your address and e-mail, annd phone number, so I will try to
call you in the next few weeks. It was so great to see you finally,
and see the Putvins again. I hope they made it home ok in the weather
too! We are supposed to return to the NIH the week of August 13th. I
think that is when the Putvins are coming too! It would be great to
get more of us in one place, and I may bring my older son and husband
along this summer, to sightsee after, so maybe I can see people coming
the following week too.

Seth says hi to Tiffanie, and they had a good time together. He wants
to wrtie or call her sometime too. he really had a lot of fun doing
arts and crafts with her, since it is one of his favorite things to do
there!

To all,

We just flew home from Chicago late last night, so I kept Seth home
today from school. It has been a nightmare, and we were already
sleep-deprived from the NIH early morning appointments (and jet lag
since 7 am at the NIh is 4 am in California). We were supposed to fly
through Dalls, but that flight got cancelled, and they sent us to
Chicago, telling us all was fine there. NOT! We got there, and they
cancelled our flight to San Francisco due to weather. Then we got
onto another flight, which was cancelled, then we were booked onto a
flight to Portland with a next day flight from Portland to San
Francisco, but then that got cancelled.

So, by then, everything was cancelled going west, and we had to sleep
in the airport (try to sleep that is) and wait in lines until midnight
for getting on standby lists, then lines for cots, lines for blankets,
and a line for pillows (which ran out). Think old Soveit Union lines
for blocks when people were trying to buy toilet paper, etc, and that
was what it was like!

I had grabbed a large wheelchair as soon as I found out the last
flight was cancelled, and bundled up Seth in it so he could start to
sleep, and be wheeled all over asleep while I waited in all the lines.
He was a good sport, and actually slept that way, then was still
asleep when I put him on the cot at midnight. Then at 4 am they came
around to take away all the cots and blankets! So Seth went back to
sleeping in the wheelchair, and I pushed him all over the rest of the
night and a lot of the day yesterday while we ran from gate to gate as
they changed them, trying to get on the standby lists.

I tell you, it is depressing how things are nowdays! Basically, no
one cares if your kids has just come out of the NIh, had LPs and still
has his hospital armbands on, and is getting low on their medications.
We are members of the frequent flyer miles for every airline we fly,
and I even have a credit a card with American (which was who we were
dealing with) but no one would help us, in person or on the phone.
They put executive'first class peole, international flights and people
with elite/platinum membership as a priority all the time, and we were
at the back of the list. We were nice, and patient, but I could not
believe that they thought it was more importnat to keep the fat
wallets happy than to risk having my son in the airport for 2 days,
and we were getting ice from Mc Donalds to keep the kineret cold, but
I did not have but one more needle for shots, since I had only planned
for a 2 day beyond our trip need for suppplies!

Luckily, we got on the last flight last night, since they brought in a
big plane and there were seats, but it was stressful. IF we had not
gotten on that one, we would still be there! They did not offer us
any accomodations, food vouchers, or nothing because they do not have
to if you are stuck due to weather. I could have left and paid for
the closest hotel the Hilton (as if I can really afford that!) but
since I had not valid flights on paper anymore, they were restricting
people coming back into the airport, so we stayed.

Seth was a good sport, and liked the idea of having Mc Donald's food
for many meals a lot. We did eat a lot of juice, fruit and salads to
make up for the burgers and nuggets, but it is hard to find other
foods that he can have due to his food allergies, so we were limited.
Thank goodness they take credit cards now, becasue I ran out of much
cash, since I was not able to get vouchers at the NIH, and also paid
for the metro to get to an from the airport in DC because the shuttle
was not running when we arrived late on Monday, or on Saturday. I
could have pushed hard for a cab, etc. but I know that there are
budget cuts, so I was not going to push too hard.

So, warning to any traveling soon, bring extra meds, and diapers or
whatever you need, and have it with you at all times! We have had
many flying issues due to weather but this was the worst.

I am thinking of asking Dr.G. to write a letter for all of us to carry
that says we should have priority for flights, ude to medical needs,
because this was ridiculous. Luckily Seth was stable, and was doing
better on this trip post LP and everything than he has in years, but I
cannot imagine the horror if this had happened to some of the other
more severely affected children!

I am sure that they are bombarded with people's issues, but I could
prove our story was true, with Seth's armbands still on, and all our
paperwork, but no one cared. I considered calling Dr. G about it, but
we luckily got out last night.

Dori, I thought of calling you, but once I found out I needed to stay
there to get any hope of getting a flight home, I didn't bother. IT
would have been fun to meet you, but under the circumstances, ti was
difficult. Thanks for sending the bylaws signature page! It was on
the table in a stack of mail when I got home, and that made my day.
Now we can get the IRS forms in, and all.

We are happy to be home!

Karen

LOVE JADE

Dear Becky,

I hope that you are feeling better, and get out soon!  Sorry that we
did not get to visit with you as much as we did with your grandmother
and daughter.  I wanted to come visit after our appointments on
Friday, but Seth's schedule kept changing, aso we were stuck at
appointments until almost dinner time, and he was tired, and wanted to
go back to the inn.

We have your address and e-mail, annd phone number, so I will try to
call you in the next few weeks.  It was so great to see you finally,
and see the Putvins again. I hope they made it home ok in the weather
too! We are supposed to return to the NIH the week of August 13th.  I
think that is when the Putvins are coming too!  It would be great to
get more of us in one place, and I may bring my older son and husband
along this summer, to sightsee after, so maybe I can see people coming
the following week too.

Seth says hi to Tiffanie, and they had a good time together.  He wants
to wrtie or call her sometime too.  he really had a lot of fun doing
arts and crafts with her, since it is one of his favorite things to do
there!

To all,

We just flew home from Chicago late last night, so I kept Seth home
today from school.  It has been a nightmare, and we were already
sleep-deprived from the NIH early morning appointments (and jet lag
since 7 am at the NIh is 4 am in California).  We were supposed to fly
through Dalls, but that flight got cancelled, and they sent us to
Chicago, telling us all was fine there. NOT! We got there, and they
cancelled our flight to San Francisco due to weather.  Then we got
onto another flight, which was cancelled, then we were booked onto a
flight to Portland with a next day flight from Portland to San
Francisco, but then that got cancelled.

So, by then, everything was cancelled going west, and we had to sleep
in the airport (try to sleep that is) and wait in lines until midnight
for getting on standby lists, then lines for cots, lines for blankets,
and a line for pillows (which ran out). Think old Soveit Union lines
for blocks when people were trying to buy toilet paper, etc, and that
was what it was like!

I had grabbed a large wheelchair as soon as I found out the last
flight was cancelled, and bundled up Seth in it so he could start to
sleep, and be wheeled all over asleep while I waited in all the lines.
  He was a good sport, and actually slept that way, then was still
asleep when I put him on the cot at midnight.  Then at 4 am they came
around to take away all the cots and blankets!  So Seth went back to
sleeping in the wheelchair, and I pushed him all over the rest of the
night and a lot of the day yesterday while we ran from gate to gate as
they changed them, trying to get on the standby lists.

I tell you, it is depressing how things are nowdays!  Basically, no
one cares if your kids has just come out of the NIh, had LPs and still
has his hospital armbands on, and is getting low on their medications.
  We are members of the frequent flyer miles for every airline we fly,
and I even have a credit a card with American (which was who we were
dealing with) but no one would help us, in person or on the phone.
They put executive'first class peole, international flights and people
with elite/platinum membership as a priority all the time, and we were
at the back of the list.  We were nice, and patient, but I could not
believe that they thought it was more importnat to keep the fat
wallets happy than to risk having my son in the airport for 2 days,
and we were getting ice from Mc Donalds to keep the kineret cold, but
I did not have but one more needle for shots, since I had only planned
for a 2 day beyond our trip need for suppplies!

Luckily, we got on the last flight last night, since they brought in a
big plane and there were seats, but it was stressful.  IF we had not
gotten on that one, we would still be there!  They did not offer us
any accomodations, food vouchers, or nothing because they do not have
to if you are stuck due to weather.  I could have left and paid for
the closest hotel the Hilton (as if I can really afford that!) but
since I had not valid flights on paper anymore, they were restricting
people coming back into the airport, so we stayed.

Seth was a good sport, and liked the idea of having Mc Donald's food
for many meals a lot.  We did eat a lot of juice, fruit  and salads to
make up for the burgers and nuggets, but it is hard to find other
foods that he can have due to his food allergies, so we were limited.
   Thank goodness they take credit cards now, becasue I ran out of much
cash, since I was not able to get vouchers at the NIH, and also paid
for the metro to get to an from the airport in DC because the shuttle
was not running when we arrived late on Monday, or on Saturday.  I
could have pushed hard for a cab, etc. but I know that there are
budget cuts, so I was not going to push too hard.

So, warning to any traveling soon, bring extra meds, and diapers or
whatever you need, and have it with you at all times!  We have had
many flying issues due to weather but this was the worst.

I am thinking of asking Dr.G. to write a letter for all of us to carry
that says we should have priority for flights, ude to medical needs,
because this was ridiculous.  Luckily Seth was stable, and was doing
better on this trip post LP and everything than he has in years, but I
cannot imagine the horror if this had happened to some of the other
more severely affected children!

I am sure that they are bombarded with people's issues, but I could
prove our story was true, with Seth's armbands still on, and all our
paperwork, but no one cared.  I considered calling Dr. G about it, but
we luckily got out last night.

Dori, I thought of calling you, but once I found out I needed to stay
there to get any hope of getting a flight home, I didn't bother. IT
would have been fun to meet you, but under the circumstances, ti was
difficult. Thanks for sending the bylaws signature page!  It was on
the table in a stack of mail when I got home, and that made my day.
Now we can get the IRS forms in, and all.

We are happy to be home!

Karen

Camille,

I have no met the families you are looking for, but your friend should look at
www.clinicaltrials.gov to see all the many research studies going on for the
disorder.
maybe that way they can find the one study that those families are doing.


To all,

We are now finsihed with all out appointments and will fly home tomorrow from
the NIH.
We were happy to see the Putvins again, and meet Becky and Tiffanie too!  Seth
and tiffanie
became good friends here, since they share a love of arts and crafts.  Hopefully
we will get
to see them again since we are now on the same 6 months schedule as them, and
any
others returning in August.  We are supposed to return the week of AUgust 12th,
but I am
not sure when Becky and Tiffanie are scheduled to return.   Jennifer, try to
come the same
week as us if you can!  between Nikki and Dr.G's vacations, there were not many
options
for August and they wanted to scheduke us in right away.

The best news is that Seth is now doing a lot better, and has normal pressures
in his CSF
and improved papilledema, so maybe the increased dose of Kineret is helping him
,since
he is on nothig else to help this issue anymore. Seth actually did the spinal
tap unsedated,
and the MRi was again done unsedated, which was good.  He seems to have not
reacted as
badly to this tap, but I am not sure if it is due to the fact he had normal CSF
prssures
again, or if it was luck, or paossibly due to no sedation.  He is very proud
that he was
awake, and did wel, and that since he has normal pressures he does not have to
have
another tap for a year (uless something changes in his CNS symptoms).

My letter to Mike Leavitt, Secretary of Health and Human Services evidenty was
sent over to
the NIH, and trickled down through the directors to The Directo of the NEI, and
then to Dr.
Bishop, the doctor that will be taking over with the NOMID patients.  She caled
me
yesterday, and I met her today in person.  I have talked with her a great deal,
and can
discuss this with anyone interested over the phone (cell 415-572-3526 or home
after
Saturday evening at 415-831-8782.)

No luck saving Dr. Rubin's position, but I guess our letters have been  noticed,
and they
are realizing now  that maybe the NEI should have considered their actions to
make such a
sudden change without notifying us, or establishing a method of training and
collaboration to transition Dr. Bishop in to the position of caring for these
patients.  She
got late notice of her role, but at least ther will be a real doctor ow assigned
to care for
our children during this situation, and maybe there will be a way figured out to
get Dr.
Rubin back.

I have insisted that the NEI contact the families in the study and get to know
these patients
and their needs, and mail an introductory letter with  the appropriate contact
information
for Dr. Bishop in case it is needed.  Of note, she never gave this to me, but
probably
assumed I can figure out how to track her down!  I have asked that they look
over ALL the
NOMID cases and get familiar with their histories, and prioritize getting caught
up on
these patients in order of the severity of the eye problems.  I have mentioned
some of your
children as priority one cases to get familiar with, such as Zach, Alice, and
many others.

Dr.Bishop agreed that these things would be helpful, so I shall be anticipating
seeing
something in my mail soon, or else I may have to discuss this issue again with
her and the
NEI.  I am not tryng to be difficult, but I think that considering what has gone
on with our
children's eyes, and the lack of concern in the NEi about how this change would
impact
these patients, a letter and a phone call to each patient's family is not much
to ask for, and
would make their job caring for these patients much easier in the long run. 
There are very
few patients, probably less than one classroom of 6th graders (35 or so patients
is
estimated)  so this is not that hard to accomplish.

In the meantime, Dr, Rubin had a private practice and is willing to keep in
touch with Dr.
G. and discuss all the NOID patients care, and do all he can for them in any way
possible,
and is willing to see patients in his private practice, and hopefully referrals
could be made
to him.  (He has an office in Potomac, not far from the NIH).

This was an awkward situation, but I feel that our efforts have not totally been
in vain, and
hopefully changes can still happen in the near future.  Again, call me to
discuss this
further.  I wish things had turned out differently, and hope that whatever the
outcome is,
that our children will get the needed care for their eyes here.

To those coming soon, talk to Dr. G. about any issues or concerns regarding the
NEI, and
about your experiences under this new system in the NEI in the coming months. 
This is
very important!  Be open to it all, but if anything is unsettling or amiss, they
need to know
about it.


Thanks again to all of you for helping the cause, and I have tried my best to
advocate for
all the NOMID families.  I have tried my best, but feel that it was not enough. 
Sorry.

Karen Durrant

Dear All,

I saw the nes with pictures of the Northeast's amssive snowfall, and
have you in my thoughts and prayers! Stay warm and safe. I cannot
imagine having to shovel our over 8 feet of snow to get out of the
house!

Sherri and Becky, I am so looking forward to seing you soon at the
NIH. Seth will be outpatient, except he will have a bed on Weds the
21st in the day hosptial when he has his LP and MRi and has to stay
down in bed all day. Last time, Seth did the MRI of his brain awake,
due to some mix up with anesthesia, but had a sedated LP. We are
considering trying to see if Seth will do an awake LP as well. I may
have to bribe him big time, but it would be better if he could avoid
the anesthesia, since he now an do the MRI awake.

Seth is helping to push the medication into his body for the shots,
but will not poke himself yet! He will take his own temperature and
other medications that are not shots, so maybe he will be able to
handle it.

Thanks again for all your help with the Dr. Rubin cause. No news yet,
but our Senator's office has been in touch with the NIH this week
already, and is working on phone calls to the director of the National
Eye Institute and other directors if possible. I guess they have to
work through a liason at the NIH to make the contacts-they cannot just
go calling the directors on my list on their own due to protocol
reasons. It dound very complicated according to the caseworker with
our Senator's office, and she warned me that these things do not
always go well. She is used to also having the people at the NIH and
other government agencies make it hard to discuss these issues, and
they are often very angry. This is concerning.

I have heard from some families that have just returned from the NIH
that the eye clinic is already more delayed than usual, so I dread how
much worse things may get. I just hope that when we come in a few
weeks that Dr. Rubin is still there!

I have not gotten word of the status with Nancy Pelosi's office on the
case yet, but she is obviously very busy as the Speaker of the House,
besides being our 8th district Congressional Representative. I am
hoping that she will also help the cause, but we shall see!

So, if anyone else wants to open a case with their officials on the
matter let me know. I really appreciate all the letters that we had
to submit with our case, along with our own. your stories and letters
were very good, and touching.

I am not sure if anything will change at the NIH, but at least I will
know that we tried, and that the word got out to our government
leaders on the matter. I suspect that very few NIH patients speak out
when these things happen, and I think that the people in charge at the
NIH may not like hearing from our Senator's office, but they are
being funded with all our tax dollars, and we have a right to make a
statement.

I'll keep you posted,

Karen Durrant

Dear Karen A. and everyone,

I am so sorry to hear that your computer has died, and you ahve lost
everything.  Have you taken it into a shop to have them try to
retrieve data?  THey can sometimes do wonders.  I am now scared, and
plan to have my husband back up all the stuff I have worked on into
discs.  We still have the normal tyoe of camera, so we have to scan
photos in, but maybe I should be glad for that!

Wow, I want to dry for you too, andd your loss is as bad as having a
house fire to lose all those photos.  I am truly sorry.  Let me know
if there is anything I can do to help you with your cause too.  We
have an old computer too, but it is a Mac, and seems to live forever,
and has never needed repairs.  I better not say that though or else I
may be next!

I am looking forward to seeing Sherri and her family, and Becky and
her daughter too, as long as they can get out of the snow!  You will
hate me if you found out how nice it was today here in San Francisco.
The Amgen Tour of California Bike Race starts here on Sunday, but I
will not be out with any activist signs about Amgen or anything.

I have no good news about Dr. Rubin at all, and my Senators office has
been amazing with their calls, but basically got told a bunch of
twisted and deceptive things but the NEI director. Very frustrating,
but I cannot go into details here.  I am hoding off sending the rest
of the letters to the heads of the NIH due to some issues that I have
found out that made me fear that any more letters at this time form
families could make us lose Dr. Rubin sooner, but that is another
story. They will be getting letters at the end of the month!

I am hoping that my case with Nancy Pelosi's office will get addressed
soon, I need to call to see how their progress has been. Senator
Feinstein's office rocks!  They were on it in days, and so helpful,
and are still willing to help me if things don't go well with the new
docotr coverage in the NEI.  This is great, and I highly recommend
making cases with congress people.

I have also send a letter to Mike Leavitt, the Secretary (head) of the
Department of Health and Human Services, but have not yet heard from
them.  I sent that letter this Minday, so it will be awhile.  He is
basically the main man for the US Health Department, and is over the
NIH and all government health care systems.

IF anything, at least we are getting awareness out there to the
government that there is a big problem, and that is good. I hear that
there is a lot of stuff going on at the NIH with cutting of funds,
programs, etc. so I fear for us sometimes! I need to contact the
people on the FCAS support group at Cold Urticaria info Island to find
out what they are talking about.  There was posts about cuts in some
of their clinical trials for Il-1 Trap, which is a drug for CIAS1
mutations, so far only for MWS and FCAS.  Stuff is going on, and it
doesn't sound good.

I will see about it all next week!  Pray that Dr. Ferris the head of
the NEI doesn't kick me in the behind as I walk down the hall at the
NEI next week!  Why does this have to be so hard sometimes?  Karen A.
I am sure you are feeling that too.  You know, try to see if maybe
your computer has crashed because it has too much on it, and see if
the experts can dump a few non-essential files, and save the  rest, if
that is still possible.  I have know a few people to have their
computer and data saved this way.

Good Luck,

Karen



--- In nomidsyndrome@yahoogroups.com, KAREN ATKINSON
<karenatkinson@...> wrote:
>
> Hi Sheri, Karen and all,
>
>   I am sorry I have not been in touch!  My computer died, I lost
everything and I am feeling quite sick over it.  I did not back things
up and now I have lost everything, virtually ever picture I took sonce
Michael was born was digital and stored on my computer, I have the odd
oned I saved in e-mail, printed or burned to CD but for the most part
it is gone.  I had been on working on a series of things also to get a
Canadian Charity registered so I can begin to start working on the
antiquated drug policies that are destroying thousands of Canadian
children in silence.  I had finally completed letters to begin
distributing and a brochure that was nealry ready to go to print.
Every last thing is gone, I balled all night last night and am still a
bit on edge as I sit here at work.  I was proud of what I had done and
was getting ready to share it with you all.  I have kept a journal
since Michaels birth that chronicled our journey, his and my pain, the
diagnosis, now it is
>  gone!  I am sorry to dump this out here.  Well anyways, yes it is
pretty cold and we have alot of snow.  Stephen's school was cancelled
yesterday so we played in the snow, it was nice to have a day off with
them and actually do something fun, no doctors apointments, no one was
sick, it was strange but well enjoyed.  Michael was so tired last
night he fell asleep in his meatloaf (way to cute!) I have to run, but
sorry for not keeping up, once I figure out how to get a new computer
I will try and get back into the swing of things again.  I think of
you all often! Karen, thank-you for your committment and time, what
you did for Dr Rubin is so important and you deserve so much praise
for the effort, you are selfless and the world (especially NOMID
families) need more people like you!  Sheri, I am so sorry I have nnot
been in touch, I don't want to start makeing excuses so please forgive
me!  I do miss you so much, I just wish there was more time in the day
(don't we all). Well
>  I have a ton of work to do, so I send my love to you all, give all
the kids a big hug and kiss from Michael, Stephen and Me and happy
belated Valentines to you all.
>
>   Love Karen (Michael's mommy)
>
>
> Sherri <sherri_p12@...> wrote:
>           Hi Everyone! Yes, we are down right, freezing! I'm sure
Dorie and
> Camille, Karen A, I am very sure you are feeling the same! Brrrrr!
> I got an email from nikki last night, I had a couple of questions for
> her and she sent an updated schedule. She said, Dr. Rubin was doing
> miranda's exam, but he was leaving a week after that. She doesn't
> really know what the outcome is going to be. I just hope all our good
> thoughts and words will help to keep him!
> I have to run, jimmy needs to be picked up from school, he has the
> lead roll in "Seven brides for seven brothers"!! He's really good! He
> also wants to do American Idol! He really has a great singing voice.
> Anyways I have to go get him. Hope everyone is well.
> Lots of love to all!
> Sherri
>
>
>
>
>
>
>   Without resources like www.nomidsyndrome.com and the NOMID
Alliance, my son, Michael would not be diagnosed and recieving
treatment that is changeing his life! Every little bit helps,
www.nomidalliance.net to donate. From our family, and especially
Michael, THANKS!
>

Hi Everyone! Yes, we are down right, freezing! I'm sure Dorie and
Camille, Karen A, I am very sure you are feeling the same! Brrrrr!
I got an email from nikki last night, I had a couple of questions for
her and she sent an updated schedule. She said, Dr. Rubin was doing
miranda's exam, but he was leaving a week after that. She doesn't
really know what the outcome is going to be. I just hope all our good
thoughts and words will help to keep him!
I have to run, jimmy needs to be picked up from school, he has the
lead roll in "Seven brides for seven brothers"!! He's really good! He
also wants to do American Idol! He really has a great singing voice.
Anyways I have to go get him. Hope everyone is well.
Lots of love to all!
Sherri

Without resources like www.nomidsyndrome.com and the NOMID Alliance, my son, Michael would not be diagnosed and recieving treatment that is changeing his life! Every little bit helps, www.nomidalliance.net to donate. From our family, and especially Michael, THANKS!

Dear All,

I saw the nes with pictures of the Northeast's amssive snowfall, and
have you in my thoughts and prayers!  Stay warm and safe.  I cannot
imagine having to shovel our over 8 feet of snow to get out of the
house!

Sherri and Becky, I am so looking forward to seing you soon at the
NIH. Seth will be outpatient, except he will have a bed on Weds the
21st in the day hosptial when he has his LP and MRi and has to stay
down in bed all day.  Last time, Seth did the MRI of his brain awake,
due to some mix up with anesthesia, but had a sedated LP.  We are
considering trying to see if  Seth will do an awake LP as well.  I may
have to bribe him big time, but it would be better if he could avoid
the anesthesia, since he now an do the MRI awake.

Seth is helping to push the medication into his body for the shots,
but will not poke himself yet!  He will take his own temperature and
other medications that are not shots, so maybe he will be able to
handle it.

Thanks again for all your help with the Dr. Rubin cause.  No news yet,
but our Senator's office has been in touch with the NIH this week
already, and is working on phone calls to the director of the National
Eye Institute and other directors if possible.  I guess they have to
work through a liason at the NIH to make the contacts-they cannot just
go calling the directors on my list on their own due to protocol
reasons. It dound very complicated according to the caseworker with
our Senator's office, and she warned me that these things do not
always go well.  She is used to also having the people at the NIH and
other government agencies make it hard to discuss these issues, and
they are often very angry.  This is concerning.

I have heard from some families that have just returned from the NIH
that the eye clinic is already more delayed than usual, so I dread how
much worse things may get.  I just hope that when we come in a few
weeks that Dr. Rubin is still there!

I have not gotten word of the status with Nancy Pelosi's office on the
case yet, but she is obviously very busy as the Speaker of the House,
besides being our 8th district Congressional Representative. I am
hoping that she will also help the cause, but we shall see!

So, if anyone else wants to open a case with their officials on the
matter let me know.  I really appreciate all the letters that we had
to submit with our case, along with our own. your stories and letters
were very good, and touching.

I am not sure if anything will change at the NIH, but at least I will
know that we tried, and that the word got out to our government
leaders on the matter.  I suspect that very few NIH patients speak out
when these things happen, and I think that the people in charge at the
NIH  may not like hearing from our Senator's office, but they are
being funded with all our tax dollars, and we have a right to make a
statement.

I'll keep you posted,

Karen Durrant

Hi Everyone! Yes, we are down right, freezing! I'm sure Dorie and
Camille, Karen A, I am very sure you are feeling the same! Brrrrr!
I got an email from nikki last night, I had a couple of questions for
her and she sent an updated schedule. She said, Dr. Rubin was doing
miranda's exam, but he was leaving a week after that. She doesn't
really know what the outcome is going to be. I just hope all our good
thoughts and words will help to keep him!
I have to run, jimmy needs to be picked up from school, he has the
lead roll in "Seven brides for seven brothers"!! He's really good! He
also wants to do American Idol! He really has a great singing voice.
Anyways I have to go get him. Hope everyone is well.
Lots of love to all!
Sherri

Dear All,

Thanks to those of you that wrote letters, or allowed me to create a
letter with your comments on this site (Sherri and Karen A). The
letters were all wonderful, and I hope that these influencial people
in government decide to help the cause!

Michelle Griffin,

Thanks so much for the call, and all that you are doing for the cause
in your area!  I look forward to hearing how things went for you
today. Don't worry about thetime zones, I am up early! If you need any
extra information, or material, let ne know.  I hope that your
representative will hep the cause.  The more people that get involved
in the government, the better!

I am going to send my indivdual letters to the NIH directors, etc.
this week. I am looking forward to getting them all out, but am glad
that I hav at least gotten the important documents to my elected
officials here.

If anyone wants to contact their elected officials and file a case,
let me know.  You need to go onto the website for your official, and
print out the release form, fill it in, and submit it with a letter,
and any other documents.  Because the NIH is a federal agency, we can
ask our officials to open a case regarding our issue.

Thanks again for all your help!

Sherri and Becky, I can't wait to see you the week of Feb. 19-24th!
Sherrie, I am looking forward to seeing you all again. We are flying
in on Feb. 19th and will stay at the Inn, at least for some of the
visit.  I will find you at the NIH Becky! We may be inpatient for part
of the visit.  I have not gotten my schedule yet from Nikki, but she
is my next person to contact!

By the way, Rhonda Foxworth does not work at the NIH anymore. I have
the numbers for the people that are now doing her job, in case anyone
needs help with travel approval, etc.  Cindy Stanley works in the
NIAMS Director's office at 301-496-0258.  Jose Salas is another
contact at 301-402-3009.

Thanks again for your support, and pray that someone with influence
will make some changes and save Dr. Rubin!

Karen Durrant

--- In nomidsyndrome@yahoogroups.com, "sfokaren2003"

HiKaren,
YES, go ahead and use all the words I said! Without Dr. Rubin I am
not sure where any of us would be, that is my biggest fear for
miranda is her losing her eyesight! These children have enough to
deal with. Dr. Rubin is the expert with our children, he knows them
and he has been following them from day one. Personally, my husband
and I think he is the best, we have seen many doctors here in NY, but
only he reassured us of her papaldema, he tests her everytime we go
to NIH.
Thanks for all your efforts Karen, I completely forgot when we left
NIH in october, we talked with Dr. Rubin about this matter. Thanks
for reminding me!!
I have to go, I will write later.
Lots of love to all,
Sherri







<sfokaren2003@...> wrote:
>
> Dear All,
>
> It's still not too late to write a short letter about your child,
and
> how Dr. Rubin has helped them, or yourself. Some have wondered if
they
> should write, since they do not have stories of miraculous healing
> from Dr. Rubin, but just excellent care, and appreciation for his
> expertise.  This is perfect too, we need every letter we can get!
>
> Sherri, I like what your said, do you want to put that in a letter
> form for me? I know life is busy for all, and this project is adding
> to my plate too, on top of work and other commitments, but to me it
is
> a top priority for the preservation of good care, and possibly my
> son's and your children's vision now and in the future. I really
don't
> have a lot of spare time, but this is how I am spending it until
> changes happen, because we all could be kicking ourselves down the
> road if we lose him, and really need him in the future.
>
> Dori,
>
> I know that Kayla has had eye issues, and if Dr. Rubin has helped
you
> in any way, please write me a letter to include with the rest today,
> if possible.  Also, have you received the Bylaws signature page yet
> from Brad?  He should have sent it to you last week, he said he
would.
>  Let me know.
>
> I will be trying to get all this to Pelosi and Feinstein's offices
> tomorrow, but if any need an extra day, please let me know, and I
can
> wait until Tuesday.
>
> Time is of the essence, since February 28th is Dr. Rubin's last day
at
> the NIH. I will hand deliver these to the offical's offices, and
then
> they will send them on to DC, which takes a few days due to having
to
> scan for Anthrax, etc. I am also going to send the letters to every
> person on that list that I wrote a few posts back, with
individualized
> cover letters for each one.
>
> Lots to do, but I really need just one letter from each of you that
> have had good care from Dr.Rubin ASAP. I am willing to do the rest
to
> make it simple for everyone else.  Please consider taking a few
> minutes today to do this!  I have already spent many hours on this
> project, and am still not done.
>
> I feel that if we don't try, then no one will help us.  We are it
> people, our kids have a very rare syndrome,  no business profits
from
> it, so if we don't take a stand, no one else will.  It stinks, but
> that is the reality of it all. If Dr. Rubin goes, then who may be
> next?  You never know, but we have an extremely expensive protocol
> that benefits a small population of patients, no drug company is
> funding it, and few people have ever heard of it.  It's not like
some
> other terrible syndromes that are rare, but known by most on this
> planet, such as muscular dystrophy, Lou Gehrigs diesease, that
> Lorenzo's Oil disorder,etc.
>
> My point is that if funding gets cut, I fear that the rare,
expensive
> syndromes that have no voice will be first on the list to go, not
the
> big ones (or the rare ones that are well-known) with a lot of
> lobbying, charities, drug funding, etc.
>
> So, I think that this issue is bigger than Dr.Rubin, and remember
that
> he is not the only expert doctor/researcher on contract losing their
> job at the end of next month! He just happens to be the one that we
> deal with, but there are many others.
>
> Please take a few minutes for the cause.  You will at least know
that
> you tried to help, and let your voice be heard.
>
> Thanks,
>
> Karen Durrant
>

Karen, I am so sorry I did not reply sooner.  Please feel free to
use anything I have said here.  I will try to write a specific
letter this weekend but, things are a little busy so I don't want to
promise.

I hope everyone is doing OK, as allways I think of you all often.

Luvs,
Miko's mommy



--- In nomidsyndrome@yahoogroups.com, "sfokaren2003"
<sfokaren2003@...> wrote:
>
> Dear All,
>
> Thanks agin to those of you that have written some amazing letters.
> Camille, thanks so much for doing this while at the NIH and I will
> call you tonight.  I hope all is going well for your there.
>
> I have not yet gone to the seantors offices and stuff yet, and
will go
> either tomorrow, or on Monday.  ( I will be there first thing on
> Monday, at the latest.)  I really need a few more of your letters
> about how Dr. Rubin has helped your children!  They do not have to
be
> long, in fact consise is best.  However, I need a few more stories.
>
> So far, I have ours, Jan's and Camilles, an would like to take
exerpts
> of Karen A's post if she agrees.
>
> I know there are more out there that have ben helped by Dr.Rubin,
and
> now is the time to share it with us.!  Please take a few minutes
> tonight or tomorrow to write it down, and e-mail it to me, and I
will
> send it will all the others.
>
> In addition if you want to send your letters on your own, please
mail
> them to the following people.
>
> The target list of people is as follows:
>
> At the NIH:
>
> Dr. Elias  A. Zerhouni, NIH Director
> Building 1-Shannon Bldg, Room 126
> 1 Center Drive
> Bethesda, MD 20892-0148
>
> 301-496-2433
>
> Dr. John Gallin, NIH Clinical Director
> Building 10-CRC- Hatfield Clinical Research Center, Room 6-2551
> 10 Center Drive
> Bethesda, MD 20892-1504
>
> 301-496-4114
>
> Dr. Michael Gottesman, Director, Intermural Research
> Building 1-Shannon Bldg. Room 160
> 1 Center Drive
> Bethesda, MD 20892-0140
>
> 301-496-1921
>
> Dr. Frederick L. Ferris III, MD, NEI Clinical Director (Nat'l Eye
> Institute Clinical Director)
> Building 10-CRC-Hatfield Research Center, Room 3-2531
> 10 Center Drive
> Bethesda, MD 20892
>
> 301-496-6583
>
> Dr. Paul A. Sieving, Director of the NEI
> Building 31-Claude D. Pepper Bldg. Room 6A03
> 31 Center Drive
> Bethesda, MD 20892- 2480
>
> 301-496-2234
>
> Dr. Sheldon S. Miller, Director of Intermural Research Science, NEI
> Building 31- Claude D. Pepper Bldg. Room 6A22
> 31 Center Drive
> Bethesda, MD 20892-2510
>
> 301-496-3180
>
> Dr. Daniel Kastner, MD, PhD, NIAMS Clinical Director
> Building 10-Magnuson CC, Room 9N214
> 10 Center Drive
> Bethesda,MD 20892-1820
>
> 301-496-8364
>
> Mr. David L. Whitmer, NEI Budget Director
> Building 31-Claude D. Pepper Bldg, Room 6A03
> 31 Center Drive
> Bethesda, MD 20892-2510
>
> 301-496-4876
>
> Mr. Mike Leavitt, Secretary, US Department of Health & Human
Services
> 200 Independence Avenue SW
> Washington DC, 20201
>
> 202-619-0257 (general office contact #) He it the main man over the
> HHS and appointed by the President. He was also the governor of
Utah 3
> times.) The HHS oversees the NIH.
>
> Other sources to contact:
>
> The Senate Committee on Health, Education, Labor and Pensions
> 428 Senate Dirksen Office Bldg.
> Washington DC, 20510
>
> See their website about the members on this committee. They oversee
> stuff related to the NIH. Sen. Ted Kennedy is a chairperson, and
many
> toehr inportant people are on the committee, including Hilary
Clinton,
> Barak Obama, etc.
>
> The House Committee on Energy And Commerce: Subcommittee on Health
> (oversees the NIH, and all to do with it).
>
> Committee on Energy and Commerce
> 2125 Rayburn House Office Building
> Washington, DC 20515
>
> (202) 225-2927
>
>
> I will be sending letters,along with the letters you write to all
> these people, and a few others so if you want to make it easy on
> yourself, just e-mail me your story/letter ASAP and I will do the
> rest! However, the more people that write the better, so if you can
> try to help in any way, please do.
>
> Thanks so much,
>
> Karen Durrant
> 415-831-8782 cell415-572-3526
>

Dear All,

It's still not too late to write a short letter about your child, and
how Dr. Rubin has helped them, or yourself. Some have wondered if they
should write, since they do not have stories of miraculous healing
from Dr. Rubin, but just excellent care, and appreciation for his
expertise.  This is perfect too, we need every letter we can get!

Sherri, I like what your said, do you want to put that in a letter
form for me? I know life is busy for all, and this project is adding
to my plate too, on top of work and other commitments, but to me it is
a top priority for the preservation of good care, and possibly my
son's and your children's vision now and in the future. I really don't
have a lot of spare time, but this is how I am spending it until
changes happen, because we all could be kicking ourselves down the
road if we lose him, and really need him in the future.

Dori,

I know that Kayla has had eye issues, and if Dr. Rubin has helped you
in any way, please write me a letter to include with the rest today,
if possible.  Also, have you received the Bylaws signature page yet
from Brad?  He should have sent it to you last week, he said he would.
  Let me know.

I will be trying to get all this to Pelosi and Feinstein's offices
tomorrow, but if any need an extra day, please let me know, and I can
wait until Tuesday.

Time is of the essence, since February 28th is Dr. Rubin's last day at
the NIH. I will hand deliver these to the offical's offices, and then
they will send them on to DC, which takes a few days due to having to
scan for Anthrax, etc. I am also going to send the letters to every
person on that list that I wrote a few posts back, with individualized
cover letters for each one.

Lots to do, but I really need just one letter from each of you that
have had good care from Dr.Rubin ASAP. I am willing to do the rest to
make it simple for everyone else.  Please consider taking a few
minutes today to do this!  I have already spent many hours on this
project, and am still not done.

I feel that if we don't try, then no one will help us.  We are it
people, our kids have a very rare syndrome,  no business profits from
it, so if we don't take a stand, no one else will.  It stinks, but
that is the reality of it all. If Dr. Rubin goes, then who may be
next?  You never know, but we have an extremely expensive protocol
that benefits a small population of patients, no drug company is
funding it, and few people have ever heard of it.  It's not like some
other terrible syndromes that are rare, but known by most on this
planet, such as muscular dystrophy, Lou Gehrigs diesease, that
Lorenzo's Oil disorder,etc.

My point is that if funding gets cut, I fear that the rare, expensive
syndromes that have no voice will be first on the list to go, not the
big ones (or the rare ones that are well-known) with a lot of
lobbying, charities, drug funding, etc.

So, I think that this issue is bigger than Dr.Rubin, and remember that
he is not the only expert doctor/researcher on contract losing their
job at the end of next month! He just happens to be the one that we
deal with, but there are many others.

Please take a few minutes for the cause.  You will at least know that
you tried to help, and let your voice be heard.

Thanks,

Karen Durrant

Ashleigh was diagnosed with Opsoclonus-myoclonus syndrome.  (which is
totally seperate of her fever/rash.  We are awaiting genetic testing
for HIDS or TRAPS.  They said the OMS is either a condition in itself
or caused by an occult neuroblastoma.  She goes in next week for a
total body MIBG scan.
We have the final results of most of ashleighs tests from the NIH.  She
has granulomas, low bone density...so many weird things.
I will keep you posted.
Shannon

Hello to all,
I hope everyone is well. We will be leaving for the NIH on Feb. 18th.
Anyhow, I have been reading the letters Karen has posted, and we are
all for the fight to keep Dr. Rubin with our study! I personally think
there is no one else who knows my daughter, and your children I am sure
better than he does. He has been with us from day one. So who knows our
kids better. Dr. Rubin has been a big asset to us and knows just what
to look for in Miranda. He is the only one who can pinpoint her
papaldema. We rely on him tremendously when we come to the NIH. He does
tests under sedation that no one else can do. We really need him! When
you have too many cooks in the kitchen, well you know the rest! I think
the only way to get accurate results for this study, or any other
study, you need consistency and the same doctors who know the patients.
I rely on the same doctors to follow the patients for accurate results.
To us, it's extrememly important when you have a child with a rare and
unusual disease. Please reconsider putting your input in. We need
Doctor Rubin! Thanks for listenting!
Lots of love to all,
Sherri & Jim & Miranda

Dear All,

Thanks agin to those of you that have written some amazing letters.
Camille, thanks so much for doing this while at the NIH and I will
call you tonight.  I hope all is going well for your there.

I have not yet gone to the seantors offices and stuff yet, and will go
either tomorrow, or on Monday.  ( I will be there first thing on
Monday, at the latest.)  I really need a few more of your letters
about how Dr. Rubin has helped your children!  They do not have to be
long, in fact consise is best.  However, I need a few more stories.

So far, I have ours, Jan's and Camilles, an would like to take exerpts
of Karen A's post if she agrees.

I know there are more out there that have ben helped by Dr.Rubin, and
now is the time to share it with us.!  Please take a few minutes
tonight or tomorrow to write it down, and e-mail it to me, and I will
send it will all the others.

In addition if you want to send your letters on your own, please mail
them to the following people.

The target list of people is as follows:

At the NIH:

Dr. Elias  A. Zerhouni, NIH Director
Building 1-Shannon Bldg, Room 126
1 Center Drive
Bethesda, MD 20892-0148

301-496-2433

Dr. John Gallin, NIH Clinical Director
Building 10-CRC- Hatfield Clinical Research Center, Room 6-2551
10 Center Drive
Bethesda, MD 20892-1504

301-496-4114

Dr. Michael Gottesman, Director, Intermural Research
Building 1-Shannon Bldg. Room 160
1 Center Drive
Bethesda, MD 20892-0140

301-496-1921

Dr. Frederick L. Ferris III, MD, NEI Clinical Director (Nat'l Eye
Institute Clinical Director)
Building 10-CRC-Hatfield Research Center, Room 3-2531
10 Center Drive
Bethesda, MD 20892

301-496-6583

Dr. Paul A. Sieving, Director of the NEI
Building 31-Claude D. Pepper Bldg. Room 6A03
31 Center Drive
Bethesda, MD 20892- 2480

301-496-2234

Dr. Sheldon S. Miller, Director of Intermural Research Science, NEI
Building 31- Claude D. Pepper Bldg. Room 6A22
31 Center Drive
Bethesda, MD 20892-2510

301-496-3180

Dr. Daniel Kastner, MD, PhD, NIAMS Clinical Director
Building 10-Magnuson CC, Room 9N214
10 Center Drive
Bethesda,MD 20892-1820

301-496-8364

Mr. David L. Whitmer, NEI Budget Director
Building 31-Claude D. Pepper Bldg, Room 6A03
31 Center Drive
Bethesda, MD 20892-2510

301-496-4876

Mr. Mike Leavitt, Secretary, US Department of Health & Human Services
200 Independence Avenue SW
Washington DC, 20201

202-619-0257 (general office contact #) He it the main man over the
HHS and appointed by the President. He was also the governor of Utah 3
times.) The HHS oversees the NIH.

Other sources to contact:

The Senate Committee on Health, Education, Labor and Pensions
428 Senate Dirksen Office Bldg.
Washington DC, 20510

See their website about the members on this committee. They oversee
stuff related to the NIH. Sen. Ted Kennedy is a chairperson, and many
toehr inportant people are on the committee, including Hilary Clinton,
Barak Obama, etc.

The House Committee on Energy And Commerce: Subcommittee on Health
(oversees the NIH, and all to do with it).

Committee on Energy and Commerce
2125 Rayburn House Office Building
Washington, DC 20515

(202) 225-2927


I will be sending letters,along with the letters you write to all
these people, and a few others so if you want to make it easy on
yourself, just e-mail me your story/letter ASAP and I will do the
rest! However, the more people that write the better, so if you can
try to help in any way, please do.

Thanks so much,

Karen Durrant
415-831-8782 cell415-572-3526

Dear All,

Thanks to Karen A, and Jan for the great statements about Dr. Rubin,
and how he has helped your children.  I posted yesterday about what we
can all do to help the cause to save Dr.Rubin.  IF you could read
this, and write an e-mail to me, or to this post about how Dr. Rubin
has helped your child, it would be appreciated.  I would like to have
these letters along with mine to share with the senator,s
representaives and NIH directors  that we are trying to convince to
help us save Dr.Rubin.

Please read my post yesterday, and help the cause. Also, in your
letter, if you could state your city and state, and/or country, (and
if you want, your address too), that would help to validate these
stories as yours, and further validate the cause.  You can e-mail me
privately with your letter and  contact info at sfokaren2003@...
  or you can post here-iot is your choice.

I am hoping to be able to have everything compiled and ready to hand
carry to my elected officials offices by Thursday, but need the
letters by tomorrow to get things all ready in time.  Time is of the
essence, since Feb. 28th will be Dr. Rubin's last day, unless we can
persuade the powers that be to make some changes!

I will also be sending letters to the directors of the NIH, and other
selected people at the NIH, and would like to share your stories with
them as well.  Please feel free to also mail letters on your own.  I
will be posting the target list tomorrow.

Thanks,

Karen Durrant

Dear Becky,

I am going to be there with Seth at the NIh that week too! I am
looking forward to meeting you and your daughter. We may be
inpatient, but we are not sure yet. We fly in on Feb. 19 and will
stay that night at the Children's Inn. I will look for you at the NIH!

Karen Durrant

--- In nomidsyndrome@yahoogroups.com, Becky Bakko <beckybakko@...> wrote:
>
> hello to all
> My doughter and i our going back to the nih on feb 19th therough
the 23 is anyone going back then .WE will be inpationt this time it
is our 3 year vist take care becky
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
> Try the free Yahoo! Mail Beta.
>

Dear All,

Thanks to  you all that have called, or e-mailed, and I have been
figuring out a game plan for us.  I am still putting together a short
statement to present to my Senators and Representative in Congress (it
just happens to be Nancy Pelosi, the new Speaker of the House that is
my congresswoman for my area of SF!).  I have called all their
offices, and plan to go in person to drop off my packet of information
and release form this week.  The people at their offices seem very
interested in the situation, and feel that we should make this a
formal case for our elected officials to address for us.

I was wondering if any of you would like to write a personal story and
e-mail it to me about what Dr. Rubin has done for you, your child, or
family, and how he has gone above and beyond to help you with your
child's eye issues.  Please also write about how few doctors on the
outside know about this syndrome, and how to treat it, especially with
the eyes, and the risks that can happen if they are not cared for by
an expert.

Dr.Rubin has worked at the NIH for 18 years, and has been willing to
do make any changes in his contract, billing, etc. to accomodate the
NIH. He is one of the few opthamologists worldwide that is doing work
with NOMID patients. He was a co-author with the NIH Anakinra study,
and many others (I looked up his CV which is like a resume of your
research work and professional work.)

IF you could write these letters, and e-mail them directly to me by
Wednesday morning at sfokaren2003@... and also post on this
yahoo group (which would be nice so we all could read them) I will
include them in my packet of information to send to various government
people and the NIH directors.

If you are willing to get your senators and representatvies involved
(the more the better), read on.

What you need to do is call your representatives, and tell them your
problem with a federal agency (in this case, the NIH, the Public
Health Service, and Health and Human Services and the FAIR ACT A-76),
and make it PERSONAL! They want to hear your story, and how it affects
you in a brief paragraph, and most importantly, WHAT YOU WANT THEM TO
DO FOR YOU IN REGARDS TO THIS PROBLEM.  Don't make it about policy,
(that will get us nowhere) but tell them how it will personally affect
you, your family, other patients and the health and quality of care if
Dr. Rubin and other contracted doctors at the NIH are let go due to
the FAIR Act A-76 and budget cuts.

I plan to sum this up better, and will post what I write online here
in a few days, so you all can see it. If you want change it and fill
in the blanks as needed to use for your own form, be my guest.

As far as what I want the representatives to do about our problem:

I want to ask my representatives to call or call/write or have a visit
with certain directors and people at the NIH.  I am still gathering
the list of target people at the NIH, and will also share that with
you all in a few days.

You need to also tell them that this doctor, and others will be
terminated at the NIH as of February 28th, so this is very time
critical, and we need their help.

In addition to this form that you fill out regarding the problem for
each representative,  you can attach a personal letter about the
issue, how it will affect you, and any supporting data, photos, etc.

I will be doing this as well, and will include a copy of the Childrens
Inn Annual report with Seth in it (Nancy Pelosi's husband is on the
Board of Directors there this year so I hope she has a soft spot for
the cause!), a brief overview of NOMID (from the www.nomidalliance.net
website and elsewhere, a copy of this article about the Fair Act A-76
in regards to the NIH
http://www.aamc.org/advocacy/library/research/corres/2003/091203.pdf
and anything else I feel is releveant.  I may also put Seth's before
and after Anakinra phots in, and note that the rash was horrible, but
actually the least of his suffering with his health compared to the
effects on his brain, eyes, hearing, joints, inflammation, etc. A
picture may be worth a thousand words!

So, that all I have for now.  Please help if you can at least write
your story about how Dr.Rubin has helped your family and e-mail it to
me as soon as possible. If you can do more, please contact your
elected officials and anyone else you can in power.

Karen A.  I want to use your story too, but I am not sure if your post
got cut off.  I think that it is a powerful story, and shows how good
Dr. Rubin is, and will give your voice a chance too.  You can also
write the NIH people, and have your representatives in Canada do that
too.  The NIH serves lots of people from foreign countries, and they
should have a voice as well.

Thanks to all of you!

Karen Durrant

Dear Becky,

I am going to be there with Seth at the NIh that week too!  I am
looking forward to meeting you and your daughter.  We may be
inpatient, but we are not sure yet.  We fly in on Feb. 19 and will
stay that night at the Children's Inn.  I will look for you at the NIH!

Karen Durrant

--- In nomidsyndrome@yahoogroups.com, Becky Bakko <beckybakko@...> wrote:
>
> hello to all
>  My doughter and i our going back to the nih on feb 19th therough
the  23 is  anyone going back then .WE  will be inpationt this time it
is our 3 year vist take care becky
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
>  Try the free Yahoo! Mail Beta.
>