Re: We are heading to the Conference

[Guest guest]

CAN U PLEASE GIVE ME MORE INFO ABOUT CONFERENCE IN HERSHEY PA SATURDAY? ARE

THEY ONCED A YEAR? IS THERE A WEB SITE/ EVEN IF IT TOO LATE 2 GO; PLEASE. PLEASE

LET ME KNOW. I HAVE A 5 YEAR OLD WH O IS SO SICK WITH THIS. THKU KATE, ROCHESTER

NY : pet_parents@... or 4waytest@...

heidikopp@... wrote: We are also heading to the conference in

Hershey tomorrow.

My girls are so excited to go and meet other kids like their little

brother, and he is anxious to meet others with PFS too. My girls want to

buy one of Lori's " I'm so HOT " t-shirts too! Anything to support their

little brother and all the kids out there that deal with this.

I am also very anxious to meet you all. I don't know if my hubby will be

able to join us, as he may have to work.

See you all then!

Heidi

Mommy of Mason, and Amber

Pennsylvania

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

I believe it is the second annual conference.

I'm not sure if you can still register.

I think one of the links below had a phone number, hopefully it's not to

late to call.

Hope these links are helpful.

http://www.hmc.psu.edu/news/pr/2005/sept/ma.periodic_fever_conference.doc

http://www.a-journey.com/schedule.html

Ellyn

Mom of (Periodic Fever) (5),

Alyssa(8), and Kate(4)

Philadelphia, PA

BOOTSIE CAT <pet_parents@...>

Sent by:

09/08/2006 03:34 PM

Please respond to

cc:

Subject: Re: We are heading to the Conference

CAN U PLEASE GIVE ME MORE INFO ABOUT CONFERENCE IN HERSHEY PA SATURDAY?

ARE THEY ONCED A YEAR? IS THERE A WEB SITE/ EVEN IF IT TOO LATE 2 GO;

PLEASE. PLEASE LET ME KNOW. I HAVE A 5 YEAR OLD WH O IS SO SICK WITH THIS.

THKU KATE, ROCHESTER NY : pet_parents@... or 4waytest@...

heidikopp@... wrote: We are also heading to the conference in Hershey

tomorrow.

My girls are so excited to go and meet other kids like their little

brother, and he is anxious to meet others with PFS too. My girls want to

buy one of Lori's " I'm so HOT " t-shirts too! Anything to support their

little brother and all the kids out there that deal with this.

I am also very anxious to meet you all. I don't know if my hubby will be

able to join us, as he may have to work.

See you all then!

Heidi

Mommy of Mason, and Amber

Pennsylvania

---------------------------------

How low will we go? Check out Messenger's low PC-to-Phone call

rates.

[Guest guest]

We were hoping to go to the conference, but instead of driving to PA, I

spent the day today sitting with moaning on the couch. There was no

way he could travel or that we could leave him. This is the worst fever he's

had in the last few months. The last two were so mild that I thought maybe

he was starting to outgrow it. (It's always when I get my hopes up that this

thing comes back with a vengeance). So we'll be thinking of all of you at

the conference tomorrow and wishing we were there. Maybe next year...

-

[Guest guest]

We would love to hear about the conference from those of you who were

there...

-

[Guest guest]

> Well.... what can I say. The conference was very informative. We had a

wonderful presenter on HIDS that gave some great insight on how in his center

they have done wonderful things with treatment and gene isolation. His name is

Dr. Morton and is at the Center for Special Children and he works with the Amish

and Mennonite populations in Lancaster PA. He does wonderful things and had a

huge amount of knowledge on genetics. Then a docotr form NIH presented on CIASI

(I believe) and NOMID. Super informative on what they are doing for this

population at NIH with diagnosis and treatment. Then Dr. Groh, pediatric

rheumatologist at Hershey Med Center talked about and a variety of

diagnosis and treatment options. Then he also talked about fever and pain

management with the various issues that affect all PFS - abdominal pain, joint

pain, mouth sores, etc. A LOT of info on the latest meds and tons of time for

questions I thought. Then Lori Todaro spoke about her experiences and the

importance of family and positive attitude. Lastly they had someone to speak on

school issues and 504 plans vs IEPs and other school issues. There was a really

nice lunch and they had a nice set-up for the children that went as well (My two

daughters that went had a great time!) The most priceless event is getting to

meet others in the same boat and talk our " lingo " with other moms and dads and

not have to expain myself a thousand times. I did not go to the pizza party they

had for everyone afterward (I wish I could have it would have been fun as well I

am sure)

Lori and her crew did a wonderful job!!!!!!!! The cost was super low and so

worth it!!! I hope those who traveled a distance feel the same way. I hope that

helps. If anyone has any more specific questions - fire away. I make no promises

though. This was my first time back in a lecture hall in a number of years. I

don't know if I could take a quiz on what I learned and pass. LOL.

Lori Rodgers

mom to four daughter including (2) ?PFS

> From: " Klooster " <andreaklooster@...>

> Date: 2006/09/09 Sat PM 07:29:28 EDT

>

> Subject: Re: We are heading to the Conference

>

> We would love to hear about the conference from those of you who were

> there...

>

> -

>

>

>

[Guest guest]

Hi there.

The Conference was a huge success! It was even better

than last year, and will just keep getting better and

better!! The speakers were wonderful and SO

informative. Being able to share and feel supported

with other families was great! The kids had an

absolute blast...you should've seen them at the pool

party!

I hope to see MANY more of you next year!!!

However.....next year there WILL BE a registration

deadline!!!!!!! MANY of you emailed me telling me you

were attending for sure. Therefore, I ordered food and

supplies based on that count...when you did not

attend-well, obviously, there was tons of food left

over and supplies that were of no use...please keep

that in mind next year!

The hotel-The Best Western-Hershey was GREAT! The

pool area was perfect for our pizza party, and a great

time was had by all. Next year you will have to

PRE-register by a certain date....we will base our

numbers on that. The information is available with

PLENTY of advance notice. You all know NOW it's the

Saturday after Labor day...The Best Western-Hershey

will again be the host hotel....the cost will be $20

as a family PRE-Registered two weeks proir to the

event!!! There will be NO email or calls that will be

accepted after that date. If you want to attend at

the last minute, you may...however, the cost will be

more expensive! The idea of the cost, which all goes

to the Nino Fund, is to just give us an idea about how

many to expect for food ordering, supply purchasing,

etc....PLEASE consider this next year!!! Thank you.

ALSO....The Nino Fund-5K Run will again be in

Carlisle, PA the LAST Saturday in July. PLEASE come

out to support a GREAT cause....a fund that helps all

of us....and our children!

Wishing you all a beautiful Sunday.

Love, Lori

--- Klooster <andreaklooster@...> wrote:

> We would love to hear about the conference from

> those of you who were

> there...

>

> -

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi Lori.

Thank you!

It was wonderful to meet you, finally, in real life!!!

Lori

--- slsjasrodgers@... wrote:

>

> > Well.... what can I say. The conference was very

> informative. We had a wonderful presenter on HIDS

> that gave some great insight on how in his center

> they have done wonderful things with treatment and

> gene isolation. His name is Dr. Morton and is at the

> Center for Special Children and he works with the

> Amish and Mennonite populations in Lancaster PA. He

> does wonderful things and had a huge amount of

> knowledge on genetics. Then a docotr form NIH

> presented on CIASI (I believe) and NOMID. Super

> informative on what they are doing for this

> population at NIH with diagnosis and treatment. Then

> Dr. Groh, pediatric rheumatologist at Hershey Med

> Center talked about and a variety of diagnosis

> and treatment options. Then he also talked about

> fever and pain management with the various issues

> that affect all PFS - abdominal pain, joint pain,

> mouth sores, etc. A LOT of info on the latest meds

> and tons of time for questions I thought. Then Lori

> Todaro spoke about her experiences and the

> importance of family and positive attitude. Lastly

> they had someone to speak on school issues and 504

> plans vs IEPs and other school issues. There was a

> really nice lunch and they had a nice set-up for the

> children that went as well (My two daughters that

> went had a great time!) The most priceless event is

> getting to meet others in the same boat and talk our

> " lingo " with other moms and dads and not have to

> expain myself a thousand times. I did not go to the

> pizza party they had for everyone afterward (I wish

> I could have it would have been fun as well I am

> sure)

> Lori and her crew did a wonderful job!!!!!!!! The

> cost was super low and so worth it!!! I hope those

> who traveled a distance feel the same way. I hope

> that helps. If anyone has any more specific

> questions - fire away. I make no promises though.

> This was my first time back in a lecture hall in a

> number of years. I don't know if I could take a quiz

> on what I learned and pass. LOL.

>

> Lori Rodgers

> mom to four daughter including (2) ?PFS

> > From: " Klooster " <andreaklooster@...>

> > Date: 2006/09/09 Sat PM 07:29:28 EDT

> >

> > Subject: Re: We are heading to the

> Conference

> >

> > We would love to hear about the conference from

> those of you who were

> > there...

> >

> > -

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

>

>

__________________________________________________

[Guest guest]

Hello Group,

I wanted to know if anyone has information from the Conference? I

would love to learn and hear about the conference.

Thanks

Sacora

>

> >

> > > Well.... what can I say. The conference was very

> > informative. We had a wonderful presenter on HIDS

> > that gave some great insight on how in his center

> > they have done wonderful things with treatment and

> > gene isolation. His name is Dr. Morton and is at the

> > Center for Special Children and he works with the

> > Amish and Mennonite populations in Lancaster PA. He

> > does wonderful things and had a huge amount of

> > knowledge on genetics. Then a docotr form NIH

> > presented on CIASI (I believe) and NOMID. Super

> > informative on what they are doing for this

> > population at NIH with diagnosis and treatment. Then

> > Dr. Groh, pediatric rheumatologist at Hershey Med

> > Center talked about and a variety of diagnosis

> > and treatment options. Then he also talked about

> > fever and pain management with the various issues

> > that affect all PFS - abdominal pain, joint pain,

> > mouth sores, etc. A LOT of info on the latest meds

> > and tons of time for questions I thought. Then Lori

> > Todaro spoke about her experiences and the

> > importance of family and positive attitude. Lastly

> > they had someone to speak on school issues and 504

> > plans vs IEPs and other school issues. There was a

> > really nice lunch and they had a nice set-up for the

> > children that went as well (My two daughters that

> > went had a great time!) The most priceless event is

> > getting to meet others in the same boat and talk our

> > " lingo " with other moms and dads and not have to

> > expain myself a thousand times. I did not go to the

> > pizza party they had for everyone afterward (I wish

> > I could have it would have been fun as well I am

> > sure)

> > Lori and her crew did a wonderful job!!!!!!!! The

> > cost was super low and so worth it!!! I hope those

> > who traveled a distance feel the same way. I hope

> > that helps. If anyone has any more specific

> > questions - fire away. I make no promises though.

> > This was my first time back in a lecture hall in a

> > number of years. I don't know if I could take a quiz

> > on what I learned and pass. LOL.

> >

> > Lori Rodgers

> > mom to four daughter including (2) ?PFS

> > > From: " Klooster " <andreaklooster@...>

> > > Date: 2006/09/09 Sat PM 07:29:28 EDT

> > >

> > > Subject: Re: We are heading to the

> > Conference

> > >

> > > We would love to hear about the conference from

> > those of you who were

> > > there...

> > >

> > > -

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> > >

> > >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Sacora

I posted some info the night of the conference. You can go back and read that

(it was Sat 9/9) in the past posts. Overall it was very informative and nice to

meet others dealing with all of this as well. If you have specific questions,

please don't hesitate to ask. The description I gave was very brief. Hope this

helps!

Lori Rodgers

mom to four daughters including (2) ?PFS

>

> From: " Sacora " <sacoracasselman@...>

> Date: 2006/09/11 Mon AM 10:38:35 EDT

>

> Subject: Re: We are heading to the Conference

>

> Hello Group,

> I wanted to know if anyone has information from the Conference? I

> would love to learn and hear about the conference.

>

> Thanks

> Sacora

>

>

>

>

>

>

> >

> > >

> > > > Well.... what can I say. The conference was very

> > > informative. We had a wonderful presenter on HIDS

> > > that gave some great insight on how in his center

> > > they have done wonderful things with treatment and

> > > gene isolation. His name is Dr. Morton and is at the

> > > Center for Special Children and he works with the

> > > Amish and Mennonite populations in Lancaster PA. He

> > > does wonderful things and had a huge amount of

> > > knowledge on genetics. Then a docotr form NIH

> > > presented on CIASI (I believe) and NOMID. Super

> > > informative on what they are doing for this

> > > population at NIH with diagnosis and treatment. Then

> > > Dr. Groh, pediatric rheumatologist at Hershey Med

> > > Center talked about and a variety of diagnosis

> > > and treatment options. Then he also talked about

> > > fever and pain management with the various issues

> > > that affect all PFS - abdominal pain, joint pain,

> > > mouth sores, etc. A LOT of info on the latest meds

> > > and tons of time for questions I thought. Then Lori

> > > Todaro spoke about her experiences and the

> > > importance of family and positive attitude. Lastly

> > > they had someone to speak on school issues and 504

> > > plans vs IEPs and other school issues. There was a

> > > really nice lunch and they had a nice set-up for the

> > > children that went as well (My two daughters that

> > > went had a great time!) The most priceless event is

> > > getting to meet others in the same boat and talk our

> > > " lingo " with other moms and dads and not have to

> > > expain myself a thousand times. I did not go to the

> > > pizza party they had for everyone afterward (I wish

> > > I could have it would have been fun as well I am

> > > sure)

> > > Lori and her crew did a wonderful job!!!!!!!! The

> > > cost was super low and so worth it!!! I hope those

> > > who traveled a distance feel the same way. I hope

> > > that helps. If anyone has any more specific

> > > questions - fire away. I make no promises though.

> > > This was my first time back in a lecture hall in a

> > > number of years. I don't know if I could take a quiz

> > > on what I learned and pass. LOL.

> > >

> > > Lori Rodgers

> > > mom to four daughter including (2) ?PFS

> > > > From: " Klooster " <andreaklooster@...>

> > > > Date: 2006/09/09 Sat PM 07:29:28 EDT

> > > >

> > > > Subject: Re: We are heading to the

> > > Conference

> > > >

> > > > We would love to hear about the conference from

> > > those of you who were

> > > > there...

> > > >

> > > > -

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > > >

> > > >

> > >

> > >

> >

> >

> > __________________________________________________

> >