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May 2009 - Posts
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 Here Donna is being honored by the American Thoracic Society for her time on the Board of Directors.
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  Remember I said we eat peanut and butter jelly sandwiches on the road to save money? Here's proof - grin. We were at the Hyatt looking for a meeting room. Donna had to run ahead because she had to speak, but we were just worn out. So, we stopped and had a little picnic right in the middle of the Hyatt Hotel.
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We did it! Congrads to our nameless challengers, and to all of those who chipped in to help us earn the three-to-one matching grant. Way to go!
This challenge was a great idea.
If anyone else would like to challenge your fellow HPS'ers, please call the Network office and talk it over with Donna.
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 I thought the graphic art for the show was pretty.
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 These are two doctors from Chili that came by the booth. They had never heard of HPS. They were very interested and asked if they could take a photo of us. We said sure! If we can take one of you! Grin! I love that scarf!
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This week we added another new family to the HPS registry. That makes 93 more HPS'ers to find this year.
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  Here's a little HPS Outreach lore - this is Qui Qui Biscuit. At the last conference in Puerto Rico Carmen was along for the trip. They were doing a lot of medical outreach and Carmen needed something to take notes. She was staying with her sister and asked for a notebook. Her sister teaches elementary school and handed her this notebook. Carmen said oh no, I can't go around to doctors and take notes in a children's notebook. Tough luck, her sister responded. That was all she had. So, Carmen and Qui Qui went all over the place taking notes. And on this trip, every important contact and follow-up task got written down in Qui Qui. We'd say to eachother, "What does Qui Qui say?"
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I just wrote an e-mail to my local doc telling him I was sending over my NIH results etc. and explaining why I haven't been in to see him. I told him I was doing great. So, I think the universe decided to punish me for thinking I'm doing really great.
I've had such bad stomach cramps and constant runs for several days now - although it's finally getting better. I've got a temp today and have been sooo tired.
I owe a ton of people e-mails, but please be patient with me. I've got so much to do still from Chicago and I've got to get healthy becuase I'm supposed to leave again.
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 Here Ashley is posing for a pic with three researchers we met at the Northwestern University alumni event at the American Thoracic Society. Dr. Gochuico went to Northwestern and thus we got invited to this party. These ladies are researching pulmonary fibrosis.
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Fran passed this along to me. I'm just posting to make everyone aware in case anyone is interested - unfortunately, the deadline is really coming up fast. Also keep in mind, however, that most of these types of programs are annual. If you can't do it this year, perhaps next year. VSA arts, in collaboration with AFI-Discovery Channel silverdocs Documentary Festival to launch the first VSA arts apprenticeship at the International Documentary Conference from June 15-20, 2009.
The VSA arts apprenticeship provides unique insight into the world of documentary filmmaking for emerging artists with disabilities, age 18 and above.
Deadline to apply: Tuesday, June 2, 2009.
Selected VSA arts apprentices will have travel and accommodations covered by VSA arts and AFI, and receive mentoring by AFI Silver's Education Coordinator Matt Boratenski.
For more information and to apply please visit www.vsarts.org.http://www.ucpeople.org/2009/05/internship-opportunity-for-aspiring.html
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 Here's our little booth in action. We really need to find a grant to pay for a new booth. Note the cookies in the front. They work very well. Everyone comments on what a great "educational tool" they are - the chocolate chip cookies for the "normal" platelets and the vanilla ones for the Hermansky-Pudlak Syndrome platelets. Funny how we go through the "normal" ones faster - no one wants the HPS platelets. Grin!
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 This was our table at the PAR dinner. I was interested in the painting that's on the wall. I'm sure it's probably mass-produced hotel art, but I had wanted to get a closer look at it. The water has such a brilliant blue. It isn't easy to mix or get such a perfect blue. I wanted to get a closer look to see if I could see paint strokes or raised paint in the image, or if it was just a mass produced easy-to-identify knock-off.
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 Here Carmen is looking at Donna's plaque. The thing is when I took the photo I thought she was texting. Grin! I didn't realize until I got the photo on a computer screen that she was looking at the award. HA!
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