Re: Boston IPF Symposium

[Guest guest]

Ken, I am so glad the symposium was success. Your getting to be a regular speaker and I am sure youdo a great job.I am sure MB will tell you tp post the slides since we are all waiting for them.. Will you please put the Dr's web sites here so we can check them out when they post them. Thanks. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." The Symposium at Beth Israel Deaconess Medical Center (BIDMC) in Boston this past Saturday was a huge success. I'd estimate that the attendance was 50% above last year and the information and answers provided were well received by those attending. Dr. Zibrak and Dr. LaCamera said the presentations should be up on their website within a couple of weeks. I was able to make it through my presentation without stumbling too much. I wish to thank the group for providing me with much of the practical advice I passed on. I once again made a pitch to have attendees join on-line support groups. Although I was in the placebo group in the Capacity 2 study for pirfenidone, I have been on the real medicine for about a year in the follow-on Recap study. Participating in a drug study is very rewarding in that the participants receive the very best care available. I was fortunate enough to have been diagnosed very early and have only required 24/7 oxygen several months following my surgical biopsy. I'm on the treadmill a lot and do use Oxygen during my exercise program. Included in my slides is a screenshot of the health management software that came with my Omron pedometer. This pedometer automatically distinguishes between aerobic and non-aerobic steps and can download the results into a computer via a USB connection. It makes keeping track of your level of exercise much easier. I did get to meet Nan at the symposium. It is always great to meet face to face with other group members. I'll post the slides from my presentation in the group files if Beth gives me the OK. I've been guilty of posting files in the past on my own without asking (I've often been more inclined to ask forgiveness afterward rather than asking for permission before probably a carryover from my days in sales). Ken Baker UIP/IPF 12/05 New Hampshire

[Guest guest]

Ken,

I'd be happy to post the slides from your presentation for you. As far as I know the settings have been changed so that only the moderator or the group owner can post files to the board's website.

So send the slides on to me and I'll be happy to post them for the rest of our members to see.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, September 14, 2009 3:21:57 PMSubject: Boston IPF Symposium

The Symposium at Beth Israel Deaconess Medical Center (BIDMC) in Bostonthis past Saturday was a huge success. I'd estimate that the attendancewas 50% above last year and the information and answers provided werewell received by those attending. Dr. Zibrak and Dr. LaCamera said thepresentations should be up on their website within a couple of weeks.I was able to make it through my presentation without stumbling toomuch. I wish to thank the group for providing me with much of thepractical advice I passed on. I once again made a pitch to haveattendees join on-line support groups. Although I was in the placebogroup in the Capacity 2 study for pirfenidone, I have been on the realmedicine for about a year in the follow-on Recap study. Participatingin a drug study is very rewarding in that the participants receive thevery best care available. I was fortunate enough to have been diagnosedvery early and have

only required 24/7 oxygen several months followingmy surgical biopsy. I'm on the treadmill a lot and do use Oxygen duringmy exercise program. Included in my slides is a screenshot of the healthmanagement software that came with my Omron pedometer. This pedometerautomatically distinguishes between aerobic and non-aerobic steps andcan download the results into a computer via a USB connection. It makeskeeping track of your level of exercise much easier.I did get to meet Nan at the symposium. It is always great to meet faceto face with other group members.I'll post the slides from my presentation in the group files if Beth gives me the OK. I've been guilty of posting files in the past onmy own without asking (I've often been more inclined to ask forgivenessafterward rather than asking for permission before probably a carryoverfrom my days in sales).Ken Baker UIP/IPF 12/05 New

Hampshire