RE: Flood the Media Day is TOMORROW! Come and see!

[Guest guest]

Just FYI-- I sent a letter to the editor via email to every newspaper in

my state-- I live in CT-- Just find a list of your state newspapers and

their editorial email addresses and there you go1

Ladden in CT- mom to 6 years old

________________________________

From: [mailto: ] On Behalf

Of picasso.moon

Sent: Wednesday, April 23, 2008 1:57 PM

Subject: Flood the Media Day is TOMORROW! Come and see!

Greetings!

Since April is PIDD Awareness Month - a few of us have been talking

about things we can do to raise awareness.

While not everyone can get out there and DO events, fundraisers and

the like of that - just due to illness, financial, or time

constraints......there IS something you CAN do from the comfort of

your own home....

It has been a topic of discussion with quite a few fellow PIDD

patients/parents that we ALL should TAKE CONTROL and let's get out

there with our VOICES and FLOOD all the talk shows, news, and TV

shows that we can with our story ALL ON THE SAME DAY!!!!!

In order to do this, WE NEED YOUR HELP......

Here's how you can help.....

Tomorrow I will be posting a Master Link List (a list of links that

you can use to send your story to). All you need to do is SEND your

story to the various links.

Be sure to include WHAT PIDD IS (you can take that directly from the

IDF site if need be) and how your life has been affected by PIDD (the

good, the bad and the ugly).

When creating your story, please keep in mind that SOME shows have

a 'word limit' on what you can email to them - I know Oprah did (the

last time I sent a story in I had to modify it).....so you may want

to keep it short or create one regular one and one short one to cover

both bases. Also mention that April is Primary Immunodeficiency

Awareness Month!

There is STRENGTH in numbers....so we can join our voices and BE

HEARD!

PLEASE TRY not to send your story on any other day than " Flood " day

(unless you won't be around on that day, of course!) - we are trying

to get their attention by sending them along ALL AT ONCE - there is

power in numbers......

I know time is valuable (trust me....trying to do this, 2 fundraisers

in May and take care of 2 sick kids has been CRAZY!!!!)

SO, I am trying to make this simple and easy for everyone to do.....

If you have any questions or comments about this PLEASE feel free to

ask!!!!

IF YOU WANT IDEAS ON WHAT TO SAY IN YOUR STORY please also ask - I

have several letter formats that I have sent MANY times to MANY

organizations, TV Shows, News Media and has worked well!!!!

B from RI is also involved - and, just so you know, anyone in

her area is welcome to visit the local site that just got up and

running: RhodeIslandPID/

<RhodeIslandPID/>

She is trying to create awareness in Rhode Island like we're doing up

here in MA - so pop in and say HI!!!!

Stay tuned....I will be posting the Master Link List tonight.

I hope that you'll be able to join us in making some noise and

raising awareness.

Thanks for reading - and THANK YOU in advance to those who

participate!

Blessings

Stefani

[Guest guest]

Just FYI-- I sent a letter to the editor via email to every newspaper in

my state-- I live in CT-- Just find a list of your state newspapers and

their editorial email addresses and there you go1

Ladden in CT- mom to 6 years old

________________________________

From: [mailto: ] On Behalf

Of picasso.moon

Sent: Wednesday, April 23, 2008 1:57 PM

Subject: Flood the Media Day is TOMORROW! Come and see!

Greetings!

Since April is PIDD Awareness Month - a few of us have been talking

about things we can do to raise awareness.

While not everyone can get out there and DO events, fundraisers and

the like of that - just due to illness, financial, or time

constraints......there IS something you CAN do from the comfort of

your own home....

It has been a topic of discussion with quite a few fellow PIDD

patients/parents that we ALL should TAKE CONTROL and let's get out

there with our VOICES and FLOOD all the talk shows, news, and TV

shows that we can with our story ALL ON THE SAME DAY!!!!!

In order to do this, WE NEED YOUR HELP......

Here's how you can help.....

Tomorrow I will be posting a Master Link List (a list of links that

you can use to send your story to). All you need to do is SEND your

story to the various links.

Be sure to include WHAT PIDD IS (you can take that directly from the

IDF site if need be) and how your life has been affected by PIDD (the

good, the bad and the ugly).

When creating your story, please keep in mind that SOME shows have

a 'word limit' on what you can email to them - I know Oprah did (the

last time I sent a story in I had to modify it).....so you may want

to keep it short or create one regular one and one short one to cover

both bases. Also mention that April is Primary Immunodeficiency

Awareness Month!

There is STRENGTH in numbers....so we can join our voices and BE

HEARD!

PLEASE TRY not to send your story on any other day than " Flood " day

(unless you won't be around on that day, of course!) - we are trying

to get their attention by sending them along ALL AT ONCE - there is

power in numbers......

I know time is valuable (trust me....trying to do this, 2 fundraisers

in May and take care of 2 sick kids has been CRAZY!!!!)

SO, I am trying to make this simple and easy for everyone to do.....

If you have any questions or comments about this PLEASE feel free to

ask!!!!

IF YOU WANT IDEAS ON WHAT TO SAY IN YOUR STORY please also ask - I

have several letter formats that I have sent MANY times to MANY

organizations, TV Shows, News Media and has worked well!!!!

B from RI is also involved - and, just so you know, anyone in

her area is welcome to visit the local site that just got up and

running: RhodeIslandPID/

<RhodeIslandPID/>

She is trying to create awareness in Rhode Island like we're doing up

here in MA - so pop in and say HI!!!!

Stay tuned....I will be posting the Master Link List tonight.

I hope that you'll be able to join us in making some noise and

raising awareness.

Thanks for reading - and THANK YOU in advance to those who

participate!

Blessings

Stefani

[Guest guest]

I focused on increasing blood donations for IVIG because there is always

a shortage of blood donations

My letter is attached.

in CT Mom to 6 years

________________________________

From: [mailto: ] On Behalf

Of Hobbs

Sent: Wednesday, April 23, 2008 3:45 PM

Subject: RE: Flood the Media Day is TOMORROW! Come and see!

I would love some ideas of what to say and maybe even see some of your

letters that have actually generated a response.

Thanks!

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

www.caringbridge.org/visit/mhobbs

hobbsfamily@... <mailto:hobbsfamily%40indy.rr.com>

..

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http://geo./serv?s=97359714/grpId=103915/grpspId=1705126171/msg

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gId=>

42094/stime=1208973415/nc1=5191945/nc2=5191951/nc3=5191953>

[Guest guest]

I would love some ideas of what to say and maybe even see some of your

letters that have actually generated a response.

Thanks!

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

www.caringbridge.org/visit/mhobbs

hobbsfamily@...

..

<http://geo./serv?s=97359714/grpId=103915/grpspId=1705126171/msgId=

42094/stime=1208973415/nc1=5191945/nc2=5191951/nc3=5191953>

[Guest guest]

I would love some ideas of what to say and maybe even see some of your

letters that have actually generated a response.

Thanks!

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

www.caringbridge.org/visit/mhobbs

hobbsfamily@...

..

<http://geo./serv?s=97359714/grpId=103915/grpspId=1705126171/msgId=

42094/stime=1208973415/nc1=5191945/nc2=5191951/nc3=5191953>

[Guest guest]

I couldn't see your attachment. Would you please try it again?

Thanks!

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

www.caringbridge.org/visit/mhobbs

hobbsfamily@ <mailto:hobbsfamily%40indy.rr.com> indy.rr.com

_____

From: [mailto: ] On Behalf Of

Ladden

Sent: Wednesday, April 23, 2008 1:51 PM

Subject: RE: Flood the Media Day is TOMORROW! Come and see!

I focused on increasing blood donations for IVIG because there is always

a shortage of blood donations

My letter is attached.

in CT Mom to 6 years

________________________________

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf

Of Hobbs

Sent: Wednesday, April 23, 2008 3:45 PM

groups (DOT) <mailto:%40> com

Subject: RE: Flood the Media Day is TOMORROW! Come and see!

I would love some ideas of what to say and maybe even see some of your

letters that have actually generated a response.

Thanks!

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

www.caringbridge.org/visit/mhobbs

hobbsfamily@ <mailto:hobbsfamily%40indy.rr.com> indy.rr.com

<mailto:hobbsfamily%40indy.rr.com>

..

<

http://geo..

<http://geo./serv?s=97359714/grpId=103915/grpspId=1705126171/msg>

com/serv?s=97359714/grpId=103915/grpspId=1705126171/msg

Id=

<http://geo..

<http://geo./serv?s=97359714/grpId=103915/grpspId=1705126171/ms>

com/serv?s=97359714/grpId=103915/grpspId=1705126171/ms

gId=>

42094/stime=1208973415/nc1=5191945/nc2=5191951/nc3=5191953>

[Guest guest]

If you go to our website

www.teamhope.info

(not sure if that will come through, if not - it's

www(dot)teamhope(dot)info and you can READ our articles in the

news....there's one from the Chelmsford Independent towards the

bottom of the page in the NEWS section that I wrote.....

Hope that helps. You can email me and I will send you others if you

would like more.

Blessings

Stefani

>

>

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> I would love some ideas of what to say and maybe even see some of

your

> letters that have actually generated a response.

>

>

>

> Thanks!

>

>

>

> Mom to , 5 - GSD and PI

>

> Meredith, 3 - GSD and PI

>

> , 8 - healthy

>

> www.caringbridge.org/visit/mhobbs

>

>

>

> hobbsfamily@...

>

>

>

>

>

> .

>

>

> <http://geo./serv?

s=97359714/grpId=103915/grpspId=1705126171/msgId=

> 42094/stime=1208973415/nc1=5191945/nc2=5191951/nc3=5191953>

>

>

>

>

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