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the magic foundation annual convention

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Since our Son (Owen was diagnosed with a congenital pituitary issue (Pan-Hypo-Pip for short), Michele had looked into attending the annual Magic Foundation Conference in Chicago IL.

I, for one, would have nothing to do with it and had said “NO” each time it was mentioned.

I was scared. Even right up to the conference. I was afraid of extrapolating from the worst case and being sad and depressed the whole time. I get teary eyed if I see a kid with crutches, which makes me a little too empathetic.

Well, Owen is 5 now, and with his doses, he seems to be developing just fine. That alone has helped, so when Michele brought it up again I was pretty receptive to the idea.

It was just Michele and I, we felt it would have been easier for us to go and get as much information as possible, and let Owen potentially attend later on so he’ll have more resources (and a sense of community) when he’s older.

Let’s start with our arrival. It is late July in Chicago, also known as Dante’s Inferno. We stepped out of the Airport and were met with an impenetrable wall of 95F heat and humidity. I may have said “F$CK” as soon as I walked out of the air conditioned airport onto the exhaust filled street.

The hotel was very nice, with all the amenities you could think of, oh, except for the internet! They did, provide wireless access for something like $10/day. I’m surprised they didn’t offer free AOL minutes (up to 20).

Thankfully, I had my phone that I was able to tether too. So while I wasn’t watching streaming media off of Netflix, I was able to plan our days after the conference was over with. I guess there are a few things I come to expect. Continental breakfasts and free internet access being some of them. I guess with this, I knew that only AT&T/NSA were keeping track of my data and not the Hotel as well.

Enough dissent, back to the Conference.

The schedule simple. The first day was registration and the main hall was vendor exhibitions. It is sort of odd to see Genetech, Nordisk and Sandoz all have their booths on their own growth hormone. Really, if I really had any say in the matter I would choose over the other, but sadly I don’t. Nice pamphlets and freebies though.

The second day was first a lecture style class. We listened first to Dr. Mitchell Geffner,MD where he gave a really good indepth discussion on the Endocrine system, how the Pituitary glad is formed (or not…) and what it does. His Q&A at the end was well done, and I got a kick out of his presentation style and how he handled things.

The second talk was from Dr. Erin Shih, DO about Puberty and Fertility. Again, a great talk, and a lot of good information.

After that, we went to the dinner and then headed out to explore the area.

The conference was just outside of Chicago in Lombard, more of a suburban community. Chicago was about 25 minutes out.

A quick tip: IL has toll-booths every 20 feet. We couldn’t pull out of the parking garage without being greeted by some guy in a booth with a hat sticking his hand out (to paraphrase George Carlin). We probably spent a good $20 in toll-booth fee’s until I set my Google Maps settings to “avoid tolls”. Thanks Google!

Lets get to the imagery already, here are some pictures from our trip to the city as well as our explorations around Lombard:

The Bowman

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I thought this looked like a Captain America ballast:

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Here are some delicious looking corn cob buildins:

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During our canal boat ride, where we learned about Chicago and its history, I took as many pictures as I could:

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The Dark Knight is up there somewhere

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Did I mention that it started to rain on us? It was super hot and sunny all day until now.

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Michele and I eating possibly some of the best pizza on the plant, Gino’s East:

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Don’t let the bright flash fool you, it was really dark in there

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Our dish, a small. I wished I had a large (more on that later)

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One more shot

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I insisted that we go there again, for a large, because I was still hungry. The next day (our last day), we went to one of the Gino’s in the suburbs, Wheaton IL.

It was pretty bad. The pizza was Okay, but man, the waitress there was just… well… I want to put it nicely…

Her intentions were good, and she was nice, but just bad at being a waitress. So, if you go, take the extra time and just go to the City. Its worth the wait.

Pizza was not enough, we had to try the infamous kettlecorn:

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We also drove around for the heck of it. Illinois has a LOT of really nice looking brick houses. We don’t get that here on the ol’ shaky west coast, our houses are build to stand shearing stress and not tornado’s.

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I found it hilarious that there were three stores with Carlson in the name. Like some industrious relative of mine set up shop in the area and owned every department store:

True Value:

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Glass, Mirror and Plastic:

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Art Supplies:

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There was one more, but some guy was sitting in a bench and he looked like he wouldn’t appreciate my stammering excuse of “we share the same name… So I’m taking a picture… for the internet…”

The conference was great, and I enjoyed meeting a few other parents. I’m disappointed that I had not exchanged information with some of the people. There was another Father and Son there from NY (who’s names sadly escape me now) who I really enjoyed talking with.

All in all, I felt much better about Owen and what he can expect in the future. It has felt very uncertain until now.

What was great is we called back home and talked to Caralyne. She was sweet, and she asked,

“So did you guys find out more information on Owne? You know, like why he’s so crazy?”

It turns out, Owen’s crazyness is separate from his actual diagnosed condition. Actually, it is still up for debate if he’s “crazy”, or just “related to his Dad”.

I mean come on, we all have a melt down in the morning if our favorite whole wheat bread is gone (or just on another shelf. Not the same shelf it’s always on)

We laughed, and told her no. His manic behavior has nothing to do with his endocrine system. We should probably address that.

What I cannot help, is thinking of all the little things that could not just make the conference better, but the entire Foudnation.

I think the Magic Foundation has a lot of evolving to do as an organization that is trying to keep up with a whole new world (social media). This is especially true for new parents (younger parents that is) who REALLY need this information as soon as possible.

I wish I had more spare time, otherwise I’d be in contact with them. First, their website looks about 15 years our of date, and really needs the eyes of a UX designer. They should be using a smart publishing system (some sort of CMS that could be extended to support their communication modalities). Also, if you are going to talk about Bills and Congress, please, run a spell check on your content before posting. It will come across as more professional.

They talked about generating awareness with a news crew, but really, that isn’t where people are going (nor should they, its too dependent on sitting in front of a TV and catching the information at the right time). Traditional media is being phased out by Twitter (and all of its Vines), Facebook, Google+ and YouTube. They should have a YouTube channel with families or physicians discussing the important issues that parents and children face.

Or even open the conference up via a YouTube channel after 90 days (thats arbitraty though). I like to reference how PyCon does it. There a separate site for PyCon than Python of course, and, pyvideos which has the video presentations. How great would that be for the families that cannot afford to travel to Chicago? It was expensive to fly there, stay for a few days, and I do alright for myself.

There were a lot of cases where I felt the information and collection of people could have been a lot more transparent and easily available.

I do respect the entire team they have, they have done a lot to protect and preserve the integrity of the parents and children that attend. I want to see this organization continue to stay relevant be there as soon as possible for people who are diagnosed.

I’d like to take Owen in the future and I’m anxious to see where they take things.