And I finally arrive with the much-delayed second entry covering our Fourth International Norrie Conference. The primary reason for its lateness is a yucky cold I developed that Tuesday for which I blame the airplane, or rather, the passenger who, I have no doubt, said “I paid $200 for this ticket so I’m going even though I’m hacking up a lung!” The consequences for that when one is sealed in a tube are great. But alas, I have recovered. The second reason for my not having written yet will likely be discussed in future posts.
If this works, I think you should be able to hear a YouTube playlist of the conference’s first day by clicking that link. I suppose that should at least take you to the page where the files are housed.
That Friday, ok what I can remember of it, begins at the bright and early time of 6:30 AM. I take the first position in getting ready, and hey it’s always hardest to drag oneself out of bed when the other is still lying there. Cleansed, I slip into my new, presidential! outfit of a button-down shirt and slacks. Then, as my wife makes her way through the morning routine, I make a couple of passes through my prepared remarks once more to try and feel a little more comfortable with them.
This all done, we make our way towards the conference venue, which for the first time is in a different location: the O’Kefe Auditorium in the main Massachusetts General Hospital. This takes some finding and more walking than our usual facility, a room on the 3rd floor of the Simches Building, but after a slightly unnerving walk through revolving doors, (I’m not the only one who gets a bit claustrophobic in there right? I mean what if they get stuck or someth9ing!) and a maze of hallways, we come across familiar faces. They have a continental breakfast available, and I opt for a blueberry muffin and orange juice. Knowing my constitution, I defer coffee until the break after I have spoken.
People slowly, sleepily file in, including two more of my family members: my Aunt and cousin. I think there were about 50 of us in total, a normal-sized audience for our small but growing conferences. At approximately 9 AM, I head to the front of the room and begin. After some fiddling with the microphone, I kind of wonder if I was too close to it after all as it kind of sounds like I’m eating it on the Youtube link (ah well), I start with my silliness.
“Fellow officers, board members, family and friends I hereby welcome you to the State of the NDA. Oh wait, I’m… not that kind of president.”
This gets the anticipated laughs. Yes we will be discussing serious topics but I always believe that starting things off with a little humor helps people feel more at ease, loosened if you will. And that is a good thing. I continue by introducing each board member and giving a remark about them: Kasey, our tireless secretary who was so much more, Allison the treasurer and speaker organizer, Nate the technology potential guy, Mark the magic webmaster, Ramsey the out-of-the-box thinker when out comes to place, Wendy the International outreach person, and Jan, the last original and now former board member. I am happy to have worked with these folks for as long as I have. Then I discussed the good of the Norrie Disease Support Group on Facebook and talked about what I learned from my Capstone, which was a strategic Communication plan for the Norrie Disease Association. And, I was done, and could relax!
Next, we have what I’m starting to find is the most exciting part of the conference, our keynote speaker. We usually find someone with Norrie who is doing great things, and this year Michael Forzano, creator of RS games and worker at Amazon, spoke for nearly an hour on how he got to where he is. Of special note his participation in boyscoutsl My cousin and I did cub scouts at least, and we were fortunate to find that people didn’t really treat us any differently either. I remember three highlighted of my experience as such: riding an old train, attending a Nascar race, and creating paper airplanes. As Forzano points out, it is very important for blind kids to be teased normally and exposed to as much as possible so that we can function in the big, real world. I appreciate that Forzano keeps it real with us noting that there were some pretty significant struggles along that road too independence. I think this lets people know that it’s ok if one experiences these, but that one can keep going and go much farther than thought possible.
Most of the rest of Friday is given to more Norrie-Related talks. We hear about gene therapy advancements in hearing and balance with Dr. Cory, introduction to Ocular Prosthetics by Kurt Jarhling, and behavioral supports for students by Matt Edwards. I know that Dr. florian Eichler spoke as well, but I am unsure of what as I cannot find it on the YouTube link. I believe it was on continuing the research on Norrie that Dr. Katherine Simms had been doing before him. Again, check out the playlist to hear more as it would take me ages to fully delineate each of those talks. They were great, though.
Coffee is had at the first break, nearly 10 AM, then a boxed lunch of a Caesar Chicken Wrap is consumed at 12. After lunch, we get up and stroll around the facilities, with my wife noting in particular the beauty of the hospital’s chapel. I am mostly just glad to be moving.
Once this long day of conferencing concludes around 4, we decide to go ahead and get our Boston stroll in before retiring to the room for the night. At my previous suggestion, we head over to historic Quincy Market to have dinner. At first, I choose to do something else, because the place is absolutely packed and quite hot. But on walking further, she discovers that there are few other good choices in that immediate vicinity so we venture back into the madness. I get a delicious chili cheese burger and fries from what my bank statement says is a place called Aris BBQ, and while I’m sitting at the table awaiting her return from the long line therein, I record this audio snippet that gives some sense of what it sounds like in there. It’s an amazing place.
And that is the substance of day 2. On this day, I am dog-tired after getting aback, and so after trying to read for a bit I clock out shortly after 9:30. More in Saturday’s post, upcoming.