RE: Leanne Update on Washington DC trip

[Guest guest]

Leanne,

Thanks for this update. We are all hopeful

for any new treatment options. It is great to have an advocate attend

these sessions and bring back some of the information disseminated there.

Congrats on your promotion we all feel it

is well deserved. Keep up the good work.

Ken Baker UIP/IPF 12/05

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Leanne Storch

Sent: Monday, June 16, 2008 2:56

PM

To: Support

Subject: 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

[Guest guest]

Leanne,

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

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