Re: Update on Washington DC trip

[Guest guest]

Congratulations, Leanne! Great news and I am sure you have earned it in spades. And thanks for the info on the conference. The use of Coumadin as a possible reversal drug is the first glimmer of hope that I have seen. Do they permit individuals, like me, for instance, to attend these conferences? I would like to go.

Jack

79/UIP - IPF/06/05 Maine

Update on Washington DC trip

Hi all,

Just wanted to give everyone an update on my trip to the NHLBI (National Heart Lung Blood Institute) and NIH (National Institutes on Health). I went to PIO (Public Interest Organization) meetings that were held in Bethesda MD, June 9-11. The NHLBI invites non-profit organizations with diseases centered around heart, lung and blood to attend this very informative meeting. Not only is it a chance to network with other non-profits, but the NHLBI has many interesting speakers giving presentations. We had a meet in greet where I was able to meet the head of the lung division of NHLBI. One of the drugs that will be in trial that they are hopeful may REVERSE the process is a blood thinner - Coumadin. The pulmonologist that I spoke to was very hopeful that this will work. It's not in trial yet. I imagine it will be in trial within the year or so.

One of the highlights of the trip was being able to attend the Advisory Counsel meeting at the NIH. Very interesting. Of particular interest to our disease is the study of proteomics. This is a project that they have been working on for 6 years at different centers across the country. They are able to bring things down to a protein level. They were actually working with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample they were able to see if the disease was in flare. Or if a person even had the disease. One of the discoveries is they will be able to test drug efficacy much more easily. That to me was very exciting news.

I also wanted to let you all know that I've been promoted at the Foundation. My new title is Executive Director.

Leanne Storch

Executive Director

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622

www.pulmonaryfibros is.org

P

F

It takes your breath away

[Guest guest]

Leanne

Congratulations....happy for you and there could be no one better. I'm

sure Mike feels the same way and comfort in having the perfect

replacement and one who knows the organization and disease so well. I

know your view of how a non-profit should work and you have my full

endorsement and support (not that you needed either) in every way. I

just couldn't imagine anyone better for the position.

>

> Hi all,

> & nbsp;

> Just wanted to give everyone an update on my trip to the NHLBI

(National Heart Lung Blood Institute) & nbsp;and NIH (National Institutes

on Health). & nbsp; I went to PIO (Public Interest Organization) meetings

that were held in Bethesda MD, June 9-11. & nbsp; The NHLBI invites

non-profit organizations with diseases centered around heart, lung and

blood to attend this very informative meeting. & nbsp; Not only is it a

chance to network with other non-profits, but the NHLBI has many

interesting speakers giving presentations. We had a meet in greet where

I was able to meet the head of the lung division of NHLBI. & nbsp; One of

the drugs that will be in trial that they are hopeful may REVERSE the

process is a blood thinner - Coumadin. & nbsp; The pulmonologist that I

spoke to was very hopeful that this will work. & nbsp; It's not in trial

yet. I imagine it will be in trial within the year or so.

> & nbsp;

> One of the highlights of the trip was being able to attend the

Advisory Counsel meeting at the NIH. & nbsp; Very interesting. & nbsp; Of

particular interest to our disease is the study of proteomics. This is a

project that they have been working on for 6 years at different centers

across the country. & nbsp; They are able to bring things down to a

protein level. & nbsp; They were actually working with RA (Rheumatoid

Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample

they were able to see if the disease was in flare. & nbsp; Or if a person

even had the disease. & nbsp; One of the discoveries is they will be able

to test drug efficacy much more easily. That to me was very exciting

news.

> & nbsp;

> I also wanted to let you all know that I've been promoted at the

Foundation. & nbsp; My new title is Executive Director.

>

>

> Leanne Storch

> Executive Director

> Pulmonary Fibrosis Foundation

> 1332 N. Halsted, Suite 201

> Chicago, IL 60622

> www.pulmonaryfibrosis.org

> P

> F

> & nbsp;

> & nbsp;It takes your breath away

>

[Guest guest]

Leanne

Congratulations - the promotion is well deserved and certainly earned. Best of everything to you in your new position!!

Fay

IPF 06/06 IL

Update on Washington DC trip

Hi all,

Just wanted to give everyone an update on my trip to the NHLBI (National Heart Lung Blood Institute) and NIH (National Institutes on Health). I went to PIO (Public Interest Organization) meetings that were held in Bethesda MD, June 9-11. The NHLBI invites non-profit organizations with diseases centered around heart, lung and blood to attend this very informative meeting. Not only is it a chance to network with other non-profits, but the NHLBI has many interesting speakers giving presentations. We had a meet in greet where I was able to meet the head of the lung division of NHLBI. One of the drugs that will be in trial that they are hopeful may REVERSE the process is a blood thinner - Coumadin. The pulmonologist that I spoke to was very hopeful that this will work. It's not in trial yet. I imagine it will be in trial within the year or so.

One of the highlights of the trip was being able to attend the Advisory Counsel meeting at the NIH. Very interesting. Of particular interest to our disease is the study of proteomics. This is a project that they have been working on for 6 years at different centers across the country. They are able to bring things down to a protein level. They were actually working with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample they were able to see if the disease was in flare. Or if a person even had the disease. One of the discoveries is they will be able to test drug efficacy much more easily. That to me was very exciting news.

I also wanted to let you all know that I've been promoted at the Foundation. My new title is Executive Director.

Leanne Storch

Executive Director

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622

www.pulmonaryfibros is.org

P

F

It takes your breath away

[Guest guest]

leanne

wow. congratulations. you deserve it.

hope you have big celebrations.

may uip 0606

glasgow

>

> Hi all,

> & nbsp;

> Just wanted to give everyone an update on my trip to the NHLBI

(National Heart Lung Blood Institute) & nbsp;and NIH (National

Institutes on Health). & nbsp; I went to PIO (Public Interest

Organization) meetings that were held in Bethesda MD, June 9-

11. & nbsp; The NHLBI invites non-profit organizations with diseases

centered around heart, lung and blood to attend this very informative

meeting. & nbsp; Not only is it a chance to network with other non-

profits, but the NHLBI has many interesting speakers giving

presentations. We had a meet in greet where I was able to meet the

head of the lung division of NHLBI. & nbsp; One of the drugs that will

be in trial that they are hopeful may REVERSE the process is a blood

thinner - Coumadin. & nbsp; The pulmonologist that I spoke to was very

hopeful that this will work. & nbsp; It's not in trial yet. I imagine

it will be in trial within the year or so.

> & nbsp;

> One of the highlights of the trip was being able to attend the

Advisory Counsel meeting at the NIH. & nbsp; Very interesting. & nbsp; Of

particular interest to our disease is the study of proteomics. This

is a project that they have been working on for 6 years at different

centers across the country. & nbsp; They are able to bring things down

to a protein level. & nbsp; They were actually working with RA

(Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking

a blood sample they were able to see if the disease was in

flare. & nbsp; Or if a person even had the disease. & nbsp; One of the

discoveries is they will be able to test drug efficacy much more

easily. That to me was very exciting news.

> & nbsp;

> I also wanted to let you all know that I've been promoted at the

Foundation. & nbsp; My new title is Executive Director.

>

>

> Leanne Storch

> Executive Director

> Pulmonary Fibrosis Foundation

> 1332 N. Halsted, Suite 201

> Chicago, IL 60622

> www.pulmonaryfibrosis.org

> P

> F

> & nbsp;

> & nbsp;It takes your breath away

>

[Guest guest]

Well, everybody close your eyes  have just popped my buttons. I just know OUR EXECUTIVE DIRECTOR was the brightest prettiest, smartest of all. Oh how much you do give of yourself Lojack, ED. LOLWe can't thank you enough. Hope you get a vacation soon..  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

Leanne, I cannot think of anyone more

deserving of this promotion! Congratulations

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna be

iron like a lion in Zion” Bob Marley

Leanne Storch wrote:

Hi all,

Just wanted to give everyone an update on my trip to the

NHLBI (National Heart Lung Blood Institute) and NIH (National

Institutes on Health). I went to PIO (Public Interest Organization)

meetings that were held in Bethesda MD, June 9-11. The NHLBI invites

non-profit organizations with diseases centered around heart, lung and

blood to attend this very informative meeting. Not only is it a chance

to network with other non-profits, but the NHLBI has many interesting

speakers giving presentations. We had a meet in greet where I was able

to meet the head of the lung division of NHLBI. One of the drugs that

will be in trial that they are hopeful may REVERSE the process is a

blood thinner - Coumadin. The pulmonologist that I spoke to was very

hopeful that this will work. It's not in trial yet. I imagine it will

be in trial within the year or so.

One of the highlights of the trip was being able to attend

the Advisory Counsel meeting at the NIH. Very interesting. Of

particular interest to our disease is the study of proteomics. This is

a project that they have been working on for 6 years at different

centers across the country. They are able to bring things down to a

protein level. They were actually working with RA (Rheumatoid

Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample

they were able to see if the disease was in flare. Or if a person even

had the disease. One of the discoveries is they will be able to test

drug efficacy much more easily. That to me was very exciting news.

I also wanted to let you all know that I've been promoted at

the Foundation. My new title is Executive Director.

Leanne Storch

Executive Director

Pulmonary Fibrosis

Foundation

1332 N. Halsted,

Suite 201

Chicago, IL 60622

www.pulmonaryfibrosis.org

P

F

It

takes your breath away

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1505 - Release Date: 6/16/2008 7:20 AM

[Guest guest]

Leanne... congratulations on your new promotion! heeehee, on your bigger responsibilities too.

I know you will do a great job Leanne.

Love,

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Update on Washington DC trip

leannewow. congratulations. you deserve it.hope you have big celebrations.may uip 0606glasgow>> Hi all,> & nbsp;> Just wanted to give everyone an update on my trip to the NHLBI (National Heart Lung Blood Institute) & nbsp;and NIH (National Institutes on Health). & nbsp; I went to PIO (Public Interest Organization) meetings that were held in Bethesda MD, June 9-11. & nbsp; The NHLBI invites non-profit organizations with diseases centered around heart, lung and blood to attend this very informative meeting. & nbsp; Not only is it a chance to network with other non-profits, but the NHLBI has many interesting speakers giving presentations. We had a meet in greet where I was able to meet the head of the lung division of NHLBI. & nbsp; One of the drugs that will be in trial that they are hopeful may REVERSE the process is a blood thinner - Coumadin. & nbsp; The pulmonologist that I spoke to was very hopeful that this will work. & nbsp; It's not in trial yet. I imagine it will be in trial within the year or so.> & nbsp;> One of the highlights of the trip was being able to attend the Advisory Counsel meeting at the NIH. & nbsp; Very interesting. & nbsp; Of particular interest to our disease is the study of proteomics. This is a project that they have been working on for 6 years at different centers across the country. & nbsp; They are able to bring things down to a protein level. & nbsp; They were actually working with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample they were able to see if the disease was in flare. & nbsp; Or if a person even had the disease. & nbsp; One of the discoveries is they will be able to test drug efficacy much more easily. That to me was very exciting news.> & nbsp;> I also wanted to let you all know that I've been promoted at the Foundation. & nbsp; My new title is Executive Director.> > > Leanne Storch> Executive Director> Pulmonary Fibrosis Foundation> 1332 N. Halsted, Suite 201> Chicago, IL 60622> www.pulmonaryfibrosis.org> P> F> & nbsp;> & nbsp;It takes your breath away>

[Guest guest]

Leanne, Congratulations on your promotion and a personal thank you for the help you've given me. Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Support <breathe-support >Subject: Update on Washington DC tripDate: Mon, 16 Jun 2008 11:56:25 -0700 (PDT)

Hi all,

Just wanted to give everyone an update on my trip to the NHLBI (National Heart Lung Blood Institute) and NIH (National Institutes on Health). I went to PIO (Public Interest Organization) meetings that were held in Bethesda MD, June 9-11. The NHLBI invites non-profit organizations with diseases centered around heart, lung and blood to attend this very informative meeting. Not only is it a chance to network with other non-profits, but the NHLBI has many interesting speakers giving presentations. We had a meet in greet where I was able to meet the head of the lung division of NHLBI. One of the drugs that will be in trial that they are hopeful may REVERSE the process is a blood thinner - Coumadin. The pulmonologist that I spoke to was very hopeful that this will work. It's not in trial yet. I imagine it will be in trial within the year or so.

One of the highlights of the trip was being able to attend the Advisory Counsel meeting at the NIH. Very interesting. Of particular interest to our disease is the study of proteomics. This is a project that they have been working on for 6 years at different centers across the country. They are able to bring things down to a protein level. They were actually working with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample they were able to see if the disease was in flare. Or if a person even had the disease. One of the discoveries is they will be able to test drug efficacy much more easily. That to me was very exciting news.

I also wanted to let you all know that I've been promoted at the Foundation. My new title is Executive Director.

Leanne Storch

Executive Director

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622

www.pulmonaryfibrosis.org

P

F

It takes your breath away

[Guest guest]

Dear Leanne,

It is amazing to see how much you are doing to help deal with

Fibrosis, for a patient to do so much is still more commendable, i

feel small that i do so little and i am taking care only of myself.

Hearty congrats on your promotion , you richly deserve it.

Geeta

- In Breathe-Support , Leanne Storch

wrote:

>

> Hi all,

> & nbsp;

> Just wanted to give everyone an update on my trip to the NHLBI

(National Heart Lung Blood Institute) & nbsp;and NIH (National

Institutes on Health). & nbsp; I went to PIO (Public Interest

Organization) meetings that were held in Bethesda MD, June 9-

11. & nbsp; The NHLBI invites non-profit organizations with diseases

centered around heart, lung and blood to attend this very

informative meeting. & nbsp; Not only is it a chance to network with

other non-profits, but the NHLBI has many interesting speakers

giving presentations. We had a meet in greet where I was able to

meet the head of the lung division of NHLBI. & nbsp; One of the drugs

that will be in trial that they are hopeful may REVERSE the process

is a blood thinner - Coumadin. & nbsp; The pulmonologist that I spoke

to was very hopeful that this will work. & nbsp; It's not in trial

yet. I imagine it will be in trial within the year or so.

> & nbsp;

> One of the highlights of the trip was being able to attend the

Advisory Counsel meeting at the NIH. & nbsp; Very interesting. & nbsp;

Of particular interest to our disease is the study of proteomics.

This is a project that they have been working on for 6 years at

different centers across the country. & nbsp; They are able to bring

things down to a protein level. & nbsp; They were actually working

with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just

by taking a blood sample they were able to see if the disease was in

flare. & nbsp; Or if a person even had the disease. & nbsp; One of the

discoveries is they will be able to test drug efficacy much more

easily. That to me was very exciting news.

> & nbsp;

> I also wanted to let you all know that I've been promoted at the

Foundation. & nbsp; My new title is Executive Director.

>

>

> Leanne Storch

> Executive Director

> Pulmonary Fibrosis Foundation

> 1332 N. Halsted, Suite 201

> Chicago, IL 60622

> www.pulmonaryfibrosis.org

> P

> F

> & nbsp;

> & nbsp;It takes your breath away

>

[Guest guest]

Congratulations on your promotion, well done you.

That is interesting. How marvellous that would be if they can reverse the process>> Hi all,> & nbsp;> Just wanted to give everyone an update on my trip to the NHLBI (National Heart Lung Blood Institute) & nbsp;and NIH (National Institutes on Health). & nbsp; I went to PIO (Public Interest Organization) meetings that were held in Bethesda MD, June 9-11. & nbsp; The NHLBI invites non-profit organizations with diseases centered around heart, lung and blood to attend this very informative meeting. & nbsp; Not only is it a chance to network with other non-profits, but the NHLBI has many interesting speakers giving presentations. We had a meet in greet where I was able to meet the head of the lung division of NHLBI. & nbsp; One of the drugs that will be in trial that they are hopeful may REVERSE the process is a blood thinner - Coumadin. & nbsp; The pulmonologist that I spoke to was very hopeful that this will work. & nbsp; It's not in trial yet. I imagine it will be in trial within the year or so.> & nbsp;> One of the highlights of the trip was being able to attend the Advisory Counsel meeting at the NIH. & nbsp; Very interesting. & nbsp; Of particular interest to our disease is the study of proteomics. This is a project that they have been working on for 6 years at different centers across the country. & nbsp; They are able to bring things down to a protein level. & nbsp; They were actually working with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample they were able to see if the disease was in flare. & nbsp; Or if a person even had the disease. & nbsp; One of the discoveries is they will be able to test drug efficacy much more easily. That to me was very exciting news.> & nbsp;> I also wanted to let you all know that I've been promoted at the Foundation. & nbsp; My new title is Executive Director.> > > Leanne Storch> Executive Director> Pulmonary Fibrosis Foundation> 1332 N. Halsted, Suite 201> Chicago, IL 60622> www.pulmonaryfibrosis.org> P> F> & nbsp;> & nbsp;It takes your breath away>

[Guest guest]

LEANNE,

CONGRATULATIONS AND WE BOTH WANT TO THANK YOU FOR WORKING ON OUR BEHALF SO TIRELESSLY!

    JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

-- Update on Washington DC trip

Hi all,

Just wanted to give everyone an update on my trip to the NHLBI (National Heart Lung Blood Institute) and NIH (National Institutes on Health). I went to PIO (Public Interest Organization) meetings that were held in Bethesda MD, June 9-11. The NHLBI invites non-profit organizations with diseases centered around heart, lung and blood to attend this very informative meeting. Not only is it a chance to network with other non-profits, but the NHLBI has many interesting speakers giving presentations. We had a meet in greet where I was able to meet the head of the lung division of NHLBI. One of the drugs that will be in trial that they are hopeful may REVERSE the process is a blood thinner - Coumadin. The pulmonologist that I spoke to was very hopeful that this will work. It's not in trial yet. I imagine it will be in trial within the year or so.

One of the highlights of the trip was being able to attend the Advisory Counsel meeting at the NIH. Very interesting. Of particular interest to our disease is the study of proteomics. This is a project that they have been working on for 6 years at different centers across the country. They are able to bring things down to a protein level. They were actually working with RA (Rheumatoid Arthritis) and SLE (Systemic lupus E) but just by taking a blood sample they were able to see if the disease was in flare. Or if a person even had the disease. One of the discoveries is they will be able to test drug efficacy much more easily. That to me was very exciting news.

I also wanted to let you all know that I've been promoted at the Foundation. My new title is Executive Director.

Leanne Storch

Executive Director

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60622

www.pulmonaryfibrosis.org

P

F

It takes your breath away