After Stanley Park, the conference began. The
MPSs are considered rare diseases, so the conference attendance of 300 scientists and 400 family members is actually quite a strong delegation. This was my first opportunity to meet and interact with the children and families, though they were busy with their own programs and the kids were off at an outdoor camp while we were in our meetings. It was great for them; I just wish we had more time to interact with them.

The conference was very interesting. It was great to meet the leading researchers in my field, people whose papers I have read (and reread) and it was great to know about the research that was being presented. I was a little star-struck, however, with some of the big names I was meeting. Here are people that have been working on this field for decades and here's little me, 6 months into the plunge. Very humbling.

For the most part, I understood what was going on--that was so refreshing and so invigorating. But I will say it was lengthy and we could have had a few more breaks... The conference ran Wednesday afternoon until Sunday at noon and we were listening to research presentations from 8-5 every day (even over lunch). Like I said, interesting, but very overwhelming. Sometimes we would bump into families during breaks, but again, the encounters were so short that it was hard to really establish a good conversation, much less an appreciation for what these families have endured because of these devastating diseases.

After the meetings and supper, we would attempt to enjoy the night life, but after one drink (or perhaps before) we would all be exhausted. The attempts were futile at best. Near the end of the conference I was sneaking up to my room during the coffee breaks to nap. It was nice staying in the host hotel for that reason...

By the time Saturday had rolled around, I had run my presentation by our collaborators at UCLA and met many of the audience members, including the man who presented before me. Essentially, this man had invented the technology our work uses and, essentially, I was saying that my way was better than his. Right after him. Really big name. That was really nerve-racking at first, but by the time they called my name, I had no fears. I say that, but I had no idea what I was saying as the presentation went on. I had rehearsed it enough (I won't dare say 'so much') that it was a second nature. I was 10 seconds under the allotted amount of time (everyone else was going ridiculously over the 10-minute limit), and only had one very easy yes/no question. It went really well. My boss and collaborators were very happy with the presentation and I received many compliments from people I didn't know including a scientist that has a disease named after him. I guess some people even asked my professor if I was his post doc. Not too shabby for 6 months on the job...
The rest of the conference was fine, though the banquet still stands out in my mind. The last evening there was a formal banquet and as we were all siting waiting for our meals, the
MPS kids from the conference paraded in. The room erupted in applause and everyone was at their feet. It was absolutely amazing--world-renowned scientists on their feet applauding for young children, many of which had diminished mental and physical capabilities. I'm sure many were not aware of the emotion in the room, but I'm sure the families felt the admiration and hope that was projected by the scientific community. Undoubtedly, this moment was the most memorable of the conference for me. There was a slide show of the kids' activities of the week--I knew they were doing a high ropes course and I wondered how that would work for the physically disabled kids. The pictures showed them lifted out of their chairs and high above the ground--I bet that was an amazing experience for them.
In the last few days, we met more families. I talked to a father that was said his adult son was easier to handle now that he was less mobile, but you could hear the sadness in his voice. My colleague met a woman who moved with her daughter from Saudi Arabia to England to get treatment for her daughter. In Saudi Arabia, it is a shame to the family to have a diseased child and treatment is not an option. Sick children are to die at home so no one outside the family knows about the disease. And we met another family with a 4-year-old with obvious developmental impairment, but since the doctors had not stated so yet, the mother was hopeful that he did not have any Central Nervous System involvement. Families and children so full of hope and yet so difficult to understand from the outside. It was so eye-opening. So beautiful.
Although it was long and exhausting, I was so glad that I got to make the trip. Not only was the presentation a great experience for me (not to mention good exposure), but it really helped me to realize that what I do in the lab is important in many families' lives. And I got to know my boss and post doc better as well. It was a great experience, and I would love to go to Adelaide for the next conference in 2010, but I would be done with a Master's by then. If I were a PhD student, on the other hand...
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