I was able to put up a few short tidbits earlier in the week because magically I was able to find a free wireless network in the hotel room. By the second day, however, the free wireless had been quashed and they wanted $20 a day to let me connect. Considering how little time we had in our hotel room, and how tired we were when we were there, it didn’t seem worth it.
So, now that I’m on the way home, I’ve got to catch up. This week myself, Donna, Karen T, Ashley and Izzy went to Toronto to participate in the meeting of the American Thoracic Society or ATS. ATS is made up of both thoracic doctors (clinicians) as well as bench researchers. It’s a great place to network to both educate the doctors about Hermansky-Pudlak Syndrome as well as hopefully facilitate moving the science its self forward. More than 16,000 doctors and scientists from around the world attended.
We had a booth on the show floor. The traffic was very good this year. Among the visitors that stand out in my mind are three pulmonologists that came by (not together) that reported having patients with HPS. There was also a doctor that came by from Mexico City who had two patients with HPS (sisters), however both recently passed away. That was discouraging. Too little, too late.
We also had a researcher stop by from a lab in Germany. She was actually of Indian background and was very intrigued with the picture we showed her of Candice, Crystal and Kathryn. She is doing research on HPS mice.
We also saw Dr. Young and Dr. Gutentag, which was a big treat. Both had posters in the poster session. Dr. Young’s poster was essentially what she presented at the HPS conference. Dr. Gutentag’s poster did have some new information on it. She explained it all to me, but I wanted to go back and study it a bit later when there wasn’t such a crowd.
I have to get so close to be able to read the posters. While I really want to learn more about the research, the fact is I’m not the one who could be in a lab somewhere actually making use of this knowledge. It just satisfies a purely intellectual need for me. Thus, I don’t want to have my big head in the way of someone who could actually take the information and do something with it. I don’t want to get in the way of the doctors talking to one another about the science, and potentially germinating new ideas. So, I get in and out as fast as I can. Grin!
Dr. Gutentag’s poster, in a very simplified nutshell, seemed to indicate that there was some sort of inflammatory signal being given off very early, earlier than had been thought before. She said she wasn’t sure why or how etc. but if further research were to show that there was something to this, it might help to develop more targeted therapies that could be given earlier in life and at least prolong the onset of lung problems. But, that’s very preliminary. It’s like putting together a giant jigsaw puzzle with thousands and thousands of pieces.
I did catch at least the last part of the session where presentations were given about drug trials underway to treat pulmonary fibrosis. The room was packed! The doctors were literally sitting on the floor, standing against the walls and falling out of the doors. I sort of muscled my way through the throng at the door (people always move for a woman with a cane) and plopped myself on the floor right in front of the big screen showing the slides. I actually prefer to sit on the floor and being able to sit so close to the screen really is a help. This way I could do it without seeming “weird.”
As the session went on, and the Pirfenidone presentation was ended, the room started to thin out. Pretty soon I was the only one left on the floor, only I didn’t realize it because I was so far to the front. When it did dawn on me, I decided to stay. Why move? This was working for me.
A number of presentations about very small trials were given. I dutifully wrote them all down and will do further research when I’m home as well as ask the docs at NIH what they think about some of these potential therapies in the pipeline.
We are in the second year of the matching grant with ATS that was awarded to Dr. Young. That meant that once again our logo was on a lot of the show signage. We also gave a modest “travel award” to help pay expenses for a researcher to attend the event and were able to make a presentation that got us more exposure.
Donna’s role as the chair of the American Thoracic Society’s Public Advisory Roundtable also has garnered us widespread exposure to this audience.
But, perhaps one of the most exciting events of the week was a presentation put on as an educational session for the doctors. In the session they presented the case of one patient (minus the name) complete with CTs, history etc. The doctors all had hand held voting devices and as the case was presented they were asked questions about what they thought, what they’d do next etc. This year the case to be presented was an HPS case. At a party last night we were able to talk to the doctor that ran this session. He told us that when asked whether to do an open lung biopsy based on the information given, that 60 percent of the doctors said they’d do it. This can be dangerous for HPS patients, especially if they are not diagnosed yet and thus no bleeding precautions are taken. Today, there are a 1,000 docs out there who now know better. Grin! It just illustrates why we need to be at meetings like this.
So, now that I’m on the way home, I’ve got to catch up. This week myself, Donna, Karen T, Ashley and Izzy went to Toronto to participate in the meeting of the American Thoracic Society or ATS. ATS is made up of both thoracic doctors (clinicians) as well as bench researchers. It’s a great place to network to both educate the doctors about Hermansky-Pudlak Syndrome as well as hopefully facilitate moving the science its self forward. More than 16,000 doctors and scientists from around the world attended.
We had a booth on the show floor. The traffic was very good this year. Among the visitors that stand out in my mind are three pulmonologists that came by (not together) that reported having patients with HPS. There was also a doctor that came by from Mexico City who had two patients with HPS (sisters), however both recently passed away. That was discouraging. Too little, too late.
We also had a researcher stop by from a lab in Germany. She was actually of Indian background and was very intrigued with the picture we showed her of Candice, Crystal and Kathryn. She is doing research on HPS mice.
We also saw Dr. Young and Dr. Gutentag, which was a big treat. Both had posters in the poster session. Dr. Young’s poster was essentially what she presented at the HPS conference. Dr. Gutentag’s poster did have some new information on it. She explained it all to me, but I wanted to go back and study it a bit later when there wasn’t such a crowd.
I have to get so close to be able to read the posters. While I really want to learn more about the research, the fact is I’m not the one who could be in a lab somewhere actually making use of this knowledge. It just satisfies a purely intellectual need for me. Thus, I don’t want to have my big head in the way of someone who could actually take the information and do something with it. I don’t want to get in the way of the doctors talking to one another about the science, and potentially germinating new ideas. So, I get in and out as fast as I can. Grin!
Dr. Gutentag’s poster, in a very simplified nutshell, seemed to indicate that there was some sort of inflammatory signal being given off very early, earlier than had been thought before. She said she wasn’t sure why or how etc. but if further research were to show that there was something to this, it might help to develop more targeted therapies that could be given earlier in life and at least prolong the onset of lung problems. But, that’s very preliminary. It’s like putting together a giant jigsaw puzzle with thousands and thousands of pieces.
I did catch at least the last part of the session where presentations were given about drug trials underway to treat pulmonary fibrosis. The room was packed! The doctors were literally sitting on the floor, standing against the walls and falling out of the doors. I sort of muscled my way through the throng at the door (people always move for a woman with a cane) and plopped myself on the floor right in front of the big screen showing the slides. I actually prefer to sit on the floor and being able to sit so close to the screen really is a help. This way I could do it without seeming “weird.”
As the session went on, and the Pirfenidone presentation was ended, the room started to thin out. Pretty soon I was the only one left on the floor, only I didn’t realize it because I was so far to the front. When it did dawn on me, I decided to stay. Why move? This was working for me.
A number of presentations about very small trials were given. I dutifully wrote them all down and will do further research when I’m home as well as ask the docs at NIH what they think about some of these potential therapies in the pipeline.
We are in the second year of the matching grant with ATS that was awarded to Dr. Young. That meant that once again our logo was on a lot of the show signage. We also gave a modest “travel award” to help pay expenses for a researcher to attend the event and were able to make a presentation that got us more exposure.
Donna’s role as the chair of the American Thoracic Society’s Public Advisory Roundtable also has garnered us widespread exposure to this audience.
But, perhaps one of the most exciting events of the week was a presentation put on as an educational session for the doctors. In the session they presented the case of one patient (minus the name) complete with CTs, history etc. The doctors all had hand held voting devices and as the case was presented they were asked questions about what they thought, what they’d do next etc. This year the case to be presented was an HPS case. At a party last night we were able to talk to the doctor that ran this session. He told us that when asked whether to do an open lung biopsy based on the information given, that 60 percent of the doctors said they’d do it. This can be dangerous for HPS patients, especially if they are not diagnosed yet and thus no bleeding precautions are taken. Today, there are a 1,000 docs out there who now know better. Grin! It just illustrates why we need to be at meetings like this.
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