Re: Update on Washington DC trip

[Guest guest]

Well, CONGRATULATIONS! Ms. Executive Director. Wow, gotta stay well, now!

I'm so proud of you. You are so smart and so dedicated. That you could accomplish this while fighting this monster is so admirable.

You go slow, girlfriend. Don't overdo!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> 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, CONGRATULATIONS! Ms. Executive Director. Wow, gotta stay well, now!

I'm so proud of you. You are so smart and so dedicated. That you could accomplish this while fighting this monster is so admirable.

You go slow, girlfriend. Don't overdo!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> 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,

For some reason I didn't even get the digest this was part of I went

and looked back thru all the inbox, spam, trash and everything... it

went from 4003-4005 and so the first I saw of it was Ken's reply I

think. Anyway, congrats, congrats, congrats. I would love to hear

more about what this new title means for you in terms of your new

areas of responsibility, new goals, new plans. I'm sure you have

lots on the burners. Thank you for reporting back about this

conference, it's great to hear about these meetings and means so

much more coming from someone who's actually there. I have to say I

am stuck on the word reverse in your possibility of research and

drugs on the horizon. My Dad and I were discussing coumadin along

the lines w/ viagra etc. today and how we could see those working w/

the body and blood flow and easing the work, but I'm missing how

they are leaping to the exciting possibility of reversing the

disease process (or do they just mean reversing PH, not PF?). I

think the testing regarding flares and the testing on Autoimmune is

so wonderful and would give concrete results rather than all the

ginuea pig feelings patients have now. Tell us more, tell us more.

Congrats again and thanks for all you do,

Kerry

37 IPF '01 S. IN

>

> 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,

For some reason I didn't even get the digest this was part of I went

and looked back thru all the inbox, spam, trash and everything... it

went from 4003-4005 and so the first I saw of it was Ken's reply I

think. Anyway, congrats, congrats, congrats. I would love to hear

more about what this new title means for you in terms of your new

areas of responsibility, new goals, new plans. I'm sure you have

lots on the burners. Thank you for reporting back about this

conference, it's great to hear about these meetings and means so

much more coming from someone who's actually there. I have to say I

am stuck on the word reverse in your possibility of research and

drugs on the horizon. My Dad and I were discussing coumadin along

the lines w/ viagra etc. today and how we could see those working w/

the body and blood flow and easing the work, but I'm missing how

they are leaping to the exciting possibility of reversing the

disease process (or do they just mean reversing PH, not PF?). I

think the testing regarding flares and the testing on Autoimmune is

so wonderful and would give concrete results rather than all the

ginuea pig feelings patients have now. Tell us more, tell us more.

Congrats again and thanks for all you do,

Kerry

37 IPF '01 S. IN

>

> 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

>