patient symposium May 3, 2008 Beth Israel Deaconess Medical Center

[Guest guest]

Update:

The symposium at Beth

Israel Deaconess

Medical Center

in Boston was a

huge success. I would estimate 150+

attendees were on hand to hear some very informative presentations. My presentation ("A Patient Perspective") was

well received and we may see some additional group members from the audience as

I did highly recommend on-line support groups.

I had previously thought that there was only one local face to face

group in the Boston vicinity (located in the Berkshires) but discovered that

there are groups at Mass General and Brigham and Womens hospitals that meet monthly.

(Vice President, Coalition for Pulmonary

Fibrosis) presented insight into that organization and offered some interesting

statistics on how common IPF really is today.

She asked that everyone contact their Congressional Members to show

support for an upcoming bill that would open up additional government research

funding for IPF. The bill does not yet have a number assigned but I'm sure we

can get on board as soon as it reaches that stage.

The presentation by Dr. on "Fundamentals of

the Lung and PFT's" gave me some new insight into how the lungs work and how

PFT's tend to measure that.

Dr. LaCamera went deeper into the biology of the lung

and spoke of how IPF introduces changes in that biology. This presentation was a eye opener to me as

it gave some new insight into the steps involved in the formation of lung

scarring associated with IPF. This

insight was necessary to better understand how different medicines are designed

to work to interrupt specific steps.

Dr. ph Zibrak spoke about clinical trials. He provided valuable insight into how the

treatment options have evolved. His long

term history of the attempts to modify the treatment strategies in the face of

evolving drug therapies gave me some more detailed background on the success

and failure of prior trials as well as insight into the changes being made in

current trials.

Dr. Sidhu Gangadharan spoke about the lung biopsy procedure

and presented graphic video of a VATS lung biopsy. He also provided details on two methods of

performing the surgical procedure to insert transtracheal catheters.

Dr. Goldberg presented details about pre-transplant evaluation at

Brigham and Womens

Hospital. There was a strong recommendation that IPF

patients be evaluated as early as possible.

I believe that everyone in attendance will be expecting this

event to repeat on at least an annual basis.

I heard many comments made about how well received this was and how

necessary it has become to have access to this level of information on an

on-going basis. My heartfelt

congratulations go out to Beth

Israel Deaconess

Medical Center ILD division on a very successful kick off

event.