Popping in again to say hello!!!!

[Guest guest]

Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook.

It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI.

I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh!

I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't.

After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc.

Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard.

Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge!

Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee!

I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam.

Now that I'm sort of caught up, I"ll try to do better!

Kirkwood

Director of Outreach, Vice President

Hermansky-Pudlak Syndrome Network

One South Road

Oyster Bay, NY 11771

1 (800) 789-9HPS

www.hermansky-pudlak.org

Personal blog: www.heatherkirkwood.blogspot.com

Search the Web at www.goodsearch.com and choose the HPS Network as your charity!